essay on empowerment of disabled

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• Indian J Psychol Med
• v.40(4); Jul-Aug 2018

Empowering People with Disabilities

Reema samuel.

Department of Occupational Therapy, Christian Medical College, Vellore, Tamil Nadu, India

K. S. Jacob

1 Department of Psychiatry, Christian Medical College, Vellore, Tamil Nadu, India E-mail: ni.ca.erollevcmc@bocajsk

INTRODUCTION

Disability, an overarching concept and an umbrella term, covers impairments in functioning, limitations in activities, and restrictions in participation in life and work.[ 1 ] The 2011 World Health Organization Report on Disability stated a prevalence of disability of around 25% (based on World Health Surveys), highlighted its significant burden in India, and contrasted it with a gross inadequacy of rehabilitation professionals and programs in the country.[ 1 ] India, a signatory of the United Nations Convention on Rights of Persons with Disabilities (UNCRPD),[ 2 ] which calls for empowerment of people with disability, has a long way to go in implementing the treaty in letter and spirit.

Disability is complex, dynamic, multidimensional, and contested.[ 1 ] The term “disability” has divergent meanings; the confusion is compounded when viewed from different theoretical frameworks and conflicting perspectives. The social model of disability, employed by occupational therapists and rehabilitation professionals since the 1900s, always argued for its multifactorial etiology and the interaction between biology and personal and social environments.[ 3 ] Occupational therapists highlighted the fact that disabilities persisted due to restriction in activity participation, perpetuated by adverse social environments, and argued for the therapeutic, diversional, and economic benefits of “occupations” to treat people with disability. However, the dominance of the medical model in the second half of the 20 th century impacted rehabilitation models and resulted in a reductionistic philosophy, which shifted the focus from optimizing functional performance to correcting dysfunction in body structure and function.[ 4 ]

The past few decades highlighted the limitations of the biomedical model for chronic diseases, marked by its inability to reverse pathology, its symptomatic treatments, and the failure to restore function in many people. This led to increasing disillusionment with the approach and resulted in the emergence of more holistic perspectives; biopsychosocial[ 5 ] and recovery models,[ 6 ] with their focus on person-centered approaches, argued for comprehensive care.

The environment has a major impact on the experience and extent of disability and the lives of people with disabilities.[ 1 ] Recent models of therapy conceptualize issues related to disability as promoting occupational performance by manipulating the interacting system of the person, their role-specific occupations, and the environmental context in which the performance of these roles takes place.[ 7 , 8 , 9 , 10 ] These models have been translated into practice frameworks, emphasizing the need to focus on occupational participation rather than a sole emphasis on remediation of deficits.[ 11 , 12 ] The UN Convention, a watershed treaty, clearly shifts disability from the “medical model” to a “social model,” from an individual and medical issue to a structural and social perspective.[ 1 , 2 ]

The change in perspective resonated the concepts of the WHO International Classification of Functioning[ 13 ] and the UNCRPD[ 2 ] that emphasized on improving social and productivity factors to reduce disability. It is also supported by research which demonstrated that different brain disorders have similar determinants as well as common psychosocial difficulties and argue for crosscutting interventions which are horizontally rather than vertically aligned.[ 14 ] Systematic reviews point to strong evidence for effectiveness of occupation- or activity-based interventions for people with physical, pediatric, or psychiatric conditions.[ 15 , 16 , 17 ] Recent occupational therapy frameworks suggest a top-down approach of first identifying a person's occupational area of concern, followed by evaluating the barriers to occupational engagement and finally, providing occupational activities as a means to improve function in these areas.

THE INDIAN SCENARIO

In spite of the renewed international focus on occupational performance and participation, India continues to be steeped in the biomedical model, with its bottom-up approach. The strategy based on the biomedical framework first evaluates abnormalities in body structure (e.g., deformities) and body function (e.g., loss of muscle power, executive function) and then prescribes interventions, exercises, and activities to improve these deficits. However, the translation of improvement in body function to enhancement in occupational performance is overlooked, leaving major lacuna in the rehabilitation of people with disabilities.

Many factors contribute to the current situation in the country and include (i) The use of linear paradigms, (ii) The Salami approach to rehabilitation, (iii) Tunnel vision and disciplinary straitjackets, and (iv) The magic pill illusion. These are briefly described.

Dysfunction is often viewed as a linear, cause-and-effect phenomenon. For example, in a person with a history of a road traffic accident, the head injury is viewed as causal, resulting in physical difficulties and deficits which lead to impaired occupational performance and ensuing economic hardship. Consequently, treatment delivery also tends to take the same bottom-up approach with its attempts at reversing the linear causal pathway. However, actual people and their lives are not so simple. The person's chances of recovery depend on their psycho-socio-economic context; personal motivation, family support, socioeconomic status, and access to good quality care play a significant part in recovery. More importantly, it is the complex interaction between these systems that make up the unique experience of a person suffering from disabilities.

Disabilities should not be viewed from a linear medical perspective, but need to be understood from a systems' approach with its psychological, social, economic, and public health environments. Interventions focusing only on body functions and structure are not only reductionistic but also ineffective. Therefore, holistic and rehabilitation interventions need to be multipronged, addressing personal, familial, social, cultural, economic, and political contexts of the individual. Occupation and occupational therapy, with its focus on productive work and social participation, become integral to minimizing the effects of disability.

Second, it is a common practice in medicine to divide treatment into various phases – acute, subacute, chronic, etc., While it was previously believed that rehabilitation was required only at the later stages of the illness, recent understanding suggests that disabilities can be present irrespective of the duration or severity of the illness, mandating early focus and prompt interventions related to functioning and occupation.[ 18 ] Even if medical factors require more attention in the acute phase, psychosocial management has also been incorporated into this stage in most developed countries. In the Indian context, psychosocial management continues to be reserved for the later stages of illness, to be used when pharmacological management has failed to show improvement in functioning. Considering the added socioeconomic burden that falls on a person with mental illness, it becomes imperative that interventions to improve productivity be initiated as soon as possible, irrespective of the stage of illness.

One of the major disadvantages of specialization and subspecialties in medicine and allied health sciences is the focus of professionals in their area of expertise, making them unable to see the big picture or provide holistic care. The efficiency of such separation will only be useful if the diverse specialists and specialties involved in the care of individuals are part of a multidisciplinary team which coordinates their efforts. Such teams should necessarily value diverse clinical and management expertise and dialog effectively.

A purely biomedical formulation is problematic for many chronic illnesses which only partially respond to optimal treatment and have persistent residual deficits, adverse medication effects, impaired functioning, livelihood issues, and difficulties in reintegrating back into life. Recent understanding argues for the centrality of healing and recovery to the care of people with chronic illnesses and disability. The recovery model attempts to distinguish clinical recovery (i.e., freedom from symptoms) from personal recovery (i.e., recovering a life worth living) for conditions where cure seems a distant reality.[ 6 ] It focuses on social and living skills, modification of the person's social environment, reduction of stress, lowering excessive demand on performance, involving family and caregivers in the treatment-rehabilitation process, and providing community services which foster dignity, autonomy, and positive self-regard while protecting human rights.

THE WAY FORWARD

India needs to acknowledge the magnitude of its disability burden. It needs to shift from persons with disability being statistics to being people with the same rights as other citizens of the country. It needs to match its rhetoric and honor the commitments given in its constitution and the UNCRPD.

Chronic illnesses, by their definition, highlight the limitations of the medical model, its failure to alter primary pathology, its symptomatic treatments, and the failure to address residual deficits and consequent disabilities. Health professionals, particularly doctors, need to realize the inadequacy of the sole use of biomedical interventions, particularly within market-based health-care systems. It calls for a change in conceptualization and understanding of mental illness, viewing it within the various environmental contexts, which will set in process a multidisciplinary approach to care and healing. The early incorporation of rehabilitation approaches, which focus on function, occupation, and real-world issues specific to the Indian population, is mandatory. The shift from clinical recovery to personal recovery is cardinal. Incorporating the biopsychosocial model also demands reduction in the hierarchy within multidisciplinary teams in favor of a more horizontal organization which will facilitate appreciation of diverse knowledge, different frameworks, distinct approaches, and unique skills.

The inadequacy of the medical approach to disability also demands that the society in general value and support people with disability. Many legal statutes already on the books, such as the Amendment of Rehabilitation Council of India Act,[ 19 ] Rights of People with Disability Act,[ 20 ] and the Mental Health Care Act,[ 21 ] need to be implemented both in letter and spirit. The guiding principles that underlie the UN Convention should direct their implementation in the country: respect for inherent dignity, individual autonomy, nondiscrimination, participation and inclusion in society, respect for difference, acceptance of persons with disabilities as part of human diversity, equality of opportunity, accessibility, gender equality, and the recognition of evolving capacities of children with disabilities.

Equality of opportunity should translate to improved/equality of outcomes. However, attitudinal barriers are bigger obstacles than physical dysfunction and financial difficulties to care of people with disabilities. Stigma and discrimination of people with disabilities are common.[ 1 ] There is a need to recognize the individual experience of disability rather than stereotype people. Generalizations about people with disabilities can not only be misleading but also harmful.[ 1 ] Personal, familial, and socioeconomic circumstances, cultural context, and access to care differentially impact dysfunction to produce variation in activity limitation and participation restriction and therefore need to be identified and managed.[ 1 ] Disability is part of the human condition, and the UN Convention mandates that disabilities are understood as a human rights issue.[ 1 , 2 ] The diversity of disability experience demands the need to let go of stereotypes and understand the unique experience and challenges of people with such conditions.[ 1 ]

In addition, disability is also a development issue.[ 1 ] The bidirectional relationship between poverty and disability demands the need for contextual understanding and support. Amartya Sen's capabilities' approach moves beyond the concepts of utility (e.g., gross domestic product) to emphasize human rights and “development as freedom,” arguing that people with disabilities face social exclusion and disempowerment and not just a lack of material resource.[ 22 ] The approach and the UN Convention argue that people with disabilities have equal rights to social protection and the state should provide safety nets to help people with disabilities to live empowered lives.[ 2 , 22 ]

The 2010 Millennium Development Goals (MDGs) also highlight disability as a cross-cutting issue for the attainment of MDGs and highlight the invisibility of people with disability in the official statistics.[ 1 ] Disability is referenced in many Sustainable Development Goals, specifically in those related to education, growth and employment, inequality, accessibility of human settlements, as well as in data collection and the monitoring of these goals.[ 23 ] Many international organizations support community-based rehabilitation.[ 24 ]

Health professionals should not only focus on functioning, occupation, and personal recovery, but should also lead the society in advocating for the rights of people with disabilities. No country can consider itself civilized unless it enables all its people to reach their full potential.

CREATING A BETTER SOCIETY: The importance of empowering people with disabilities

If you have no disabilities, you may not have given much thought to the financial, psychological and emotional ramifications of not being able to do things that perfectly healthy people do automatically. If you look physically healthy, you may not have any awareness of the painful discrimination in all areas of life that people with disabilities live with on a daily basis.

Imagine yourself in a wheelchair trying to negotiate a steep curb, trying to enter a building or some form of transportation, or attempting to enter a bathroom that fails to accommodate you. Aside from these and countless similar situations being inconvenient, they are very disempowering. They send the message that you’re not a worthy human being.

People with intellectual disabilities also suffer similar types of discrimination on a daily basis. Their challenges are different, but they too are treated in ways that are very shaming and disempowering .

I’m one of many people living with hidden disabilities. Because I look perfectly healthy, people sometimes make shaming remarks when I tell them I won’t have the energy to attend their event or party, that I can’t eat in many restaurants, that I need someone else to move a chair or lift an object, or that none of their chairs support my back.

Thanks to the many non-profit organizations around the United States that are dedicated to serving people with all types of disabilities, people who in past times were left behind to waste away are now given the type of support that can help them live full and productive lives.

Whether their disability is the result of a traumatic accident, a stroke, a neurodegenerative disease, a genetic condition present since birth, a debilitating medical condition that has developed, or some other cause, there are non-profit community organizations available to help.

Volunteers from these organizations drive people to appointments or shopping when they can no longer drive, and in some cases, can’t take public transportation. They also deliver meals, make home repairs or modifications, advise those in their care on various matters and provide several types of advocacy. They offer various types of independent living skills training, counselling, and group support, besides arranging employment opportunities that are appropriate for various levels of disability, and providing many additional services.

The mission statements of these non-profit community organizations have some similarities. I’ve chosen the mission statement of the Marin Center for Independent Living (MCIL) to give you an example of why these organizations are so important. The MCIL mission statement reads as follows:

To assist persons with all types of disabilities to achieve their maximum level of sustainable independence as contributing, responsible and equal participants in society.

Below is an explication of the MCIL mission statement, which is congruent with the mission of hundreds of other non-profit community organizations that exist to make life better for people living with any type of disability.

To assist doesn’t necessarily mean to take care of. What we refer to as government assistance, most commonly known as public assistance, refers to providing money, food, shelter and other basic needs. This form of assistance, although it’s most efficacious when used to help people get back on their feet in acute situations, and is essential in order to prevent people from dying in the streets, isn’t the type of assistance that catalyzes self-efficacy.

In the long term, people don’t thrive when they’re dependent on assistance. Public assistance is anathema to people living with disabilities. Disabilities are chronic conditions that don’t have to prevent people from living full, productive lives. People with disabilities don’t want to be dependent on others to do things for them—they want what we all want—to be self-sufficient and to be able to live with a sense of mastery and dignity.

The best form of assistance engenders self-efficacy—the confidence that we can set and accomplish goals and master everyday tasks. The type of assistance offered by the independent living centres (nationwide) and many other non-profit community organizations such as California-based Lifehouse, Opportunity for Independence , LaChris Connection , Designing Accessible Communities , and others throughout the country serves to catalyze self-efficacy and mastery by removing barriers and providing the type of support to people with all types of disabilities that can help them live full and productive lives.

The need to work towards achieving our goals is universal, as setting goals and then working towards accomplishing them helps make life worthwhile. Goals can be related to work, athletic endeavours, gardening , learning a new skill, resolving a contentious relationship, or finding a way to more effectively manage activities of everyday living.

Research psychologist Mihály Csikszentmihalyi’s concept of flow has now been proven, within many studies, to contribute to a meaningful life. Flow is a very healthy state, wherein we feel challenged at our ability level. If we set goals that we can achieve without feeling challenged, there’s no state of flow and little satisfaction. Conversely, if we set goals that are so challenging that we are simply not able to achieve them, again, there is no state of flow and only frustration.

Unfortunately, you can’t achieve goals when barriers prevent you from getting in the door. Worse than that, certain barriers prevent people with disabilities from even setting goals in the first place. In order to set goals, we need to have hope that we can accomplish those goals.

A common experience for most of us is that of being unable to achieve a certain goal and then having to reassess our capabilities and set different goals. This is part of life. But when we can’t see any hope of achieving a goal due to a barrier to our success, which could easily be removed with the support of others, it’s to everyone’s benefit to do everything possible to remove that barrier, because barriers destroy lives and prevent otherwise productive people from being able to be responsible, contributing participants in society.

Examples of barriers include steps that prevent anyone in a wheelchair, walker, or scooter, or even someone using a cane, from gaining access to a building or a method of transportation.

Another type of barrier involves employment discrimination. When employers see a physically disabled person, they often assume that person is unlikely to be a productive worker, or they may conclude that it wouldn’t be worth it for them to make the necessary accommodations to meet that potential employee’s needs. However, there are many people who, despite blindness, deafness, and other serious physical disabilities, are very productive workers. Similarly, employees with intellectual disabilities can be very loyal workers, yet, again, employers typically don’t want to take the risk.

Their maximum level

It’s not important for people with disabilities to be able to compete with other people as much as it’s important that they live life to the fullest with their disability. What matters most is that each individual, regardless of disability, is able to reach their maximum level of achievement and independence, given their specific circumstances.

Part of being human is the need to test ourselves to see what we can do. This is why some people become star athletes, and many world-class athletes are paraplegic. Paraplegics ski; play lacrosse, rugby and basketball; compete in Ironman events; and participate in countless other sports. Even those living with quadriplegia can live a full life. Although they can’t participate in athletics, new technology does allow them to communicate effectively, be creative, compete within the job market and earn a living. They do need the assistance of others in order to reach their maximum level of independence and achievement, given their physical limitations.

Those who live with an intellectual disability can also be assisted to reach their maximum level of achievement and independence. Therefore, they too can find meaning and purpose in life and develop loving relationships.

Of sustainable independence

Sustainable independence provides a sense of life mastery, regardless of the nature of the disability. When people are assisted in ways that lead to the acquisition of new skills and the removal of barriers, they tend to develop a sense of hope, optimism, and self-efficacy, and a desire to set and work towards goals. This is a healthy path that allows them to sustain their independence, because they are able to see open doors and opportunities, rather than barriers.

There’s an expression that states, “It’s better to teach people to fish than to just give them a fish.”   When we assist people with disabilities in such a way as to help them sustain their independence, we create a happier, more connected and productive society.

As contributing

Public assistance is essential to help people get back on their feet, but that type of assistance, by itself, does not always lead to optimism, hope and a sense of well-being. In a number of epidemiological studies in which the researchers controlled for all possible confounding variables, those individuals who actively contributed to the improvement of other people’s lives, in some way, had lower rates of morbidity and mortality.

Those who helped others were happier and healthier than those who avoided formal volunteer work, or who tended to never extend a helping hand to anyone. Think about a time you failed to help someone in need; how did you feel? Now, think of a time you went out of your way to help someone; how did you feel then?

The reason that people who do volunteer work are happier and healthier than those who avoid helping others is easily understood when you consider how different you feel (physically and emotionally) when you reach out to help, vs. when you reject an opportunity to help.

People with disabilities have fewer opportunities to help others, but with support, almost all of them can find some way to serve others in need, and thereby experience the same benefits that are available to the rest of us. The very best way to help others is to help them find a way to serve others. Reaching out to help others may be the most effective way to build self-efficacy, self-esteem and mastery.

Responsible

When people are responsible for a child, an elderly or sick parent or spouse, or anyone else, they tend to feel better about themselves. Nurses and doctors thrive on being responsible for their patients. Psychotherapists and most people in the helping professions thrive on being responsible for their clients.

Military leaders often go through personal growth experiences while they are responsible for all those under their command. When people with disabilities don’t get to have responsible jobs or positions in society, they miss out on many opportunities to develop self-efficacy. It’s extremely difficult to feel good about yourself when all decisions are made for you and everything is done for you.

There was a wonderful study by Dr. Ellen Langer in which her team divided nursing home residents into two groups. Half the residents were given a plant and told that they were not responsible for it, as someone else would come in to their room each day to water it. The other half of the residents were told that they were fully responsible for the care of their own plants. After six months, the residents who were told they were responsible had lower rates of morbidity and mortality.

In the corporate world, it’s commonly known that attractive, tall people tend to get promoted more often than short or homely people. People in wheelchairs usually find themselves having conversations with people who tower over them, and many people actually ignore them. This is extremely disempowering. Part of being human involves a need to be treated fairly, and as an equal, by others.

Participants in society

There have been some indigenous cultures in which the punishment for a crime was that everyone in the community would stop speaking to that individual, and that individual would no longer be allowed to participate in any community activities. Consistently, the person accused of the crime died within roughly 30 days.

We all need to participate in society in order to live full, productive and happy lives. People who retire from a long career and isolate themselves, no longer participating in productive activities of some sort with others, tend to die within a couple of years of their retirement.

The path to a better society

When we assist others so that they may pursue their goals, people who may otherwise be a drain on society are able to contribute to it instead. By providing social services, we ensure that more people can enter the workforce and achieve their maximum level of sustainable independence as contributing, responsible and equal societal participants.

According to the United Nations, people living with disabilities make up the largest minority group in the world and account for roughly 10 percent of the world’s population. If we add in those living with hidden disabilities, the figure is considerably higher.

Just for economic reasons alone, doesn’t it make sense to help disabled people become contributing, responsible and equal participants in the society in which we all live? If you want to pay lower taxes, support the programs that empower people and provide them with the skills and opportunities to work and to contribute to society.

Think back to how you felt the last time you thought that you had nothing of value to contribute. Next, recall how you felt the last time you were appreciated, or simply felt proud of some contribution you made that helped make life better for others. In the first instance, you most likely experienced some sort of somatic distress, such as fatigue or sadness. In the second instance, you probably felt a great sense of satisfaction and may have felt more connected to others. Any time you feel good about yourself, your physiological functioning improves—sometimes enough to contribute to improved health.

My dream is to live in a global village where people recognize that when we help those with disabilities develop the confidence and skills they need to contribute to society, we create a society that we all want to live in.

[su_panel background=”#f2f2f2″ color=”#000000″ border=”0px none #ffffff” shadow=”0px 0px 0px #ffffff”]A mind-body medicine researcher with personal experience living with chronic medical conditions, Dr. Larry Berkelhammer teaches about the connections between the mind and health, with an emphasis on growth practices most strongly associated with better health outcomes. He is the author of In Your Own Hands: New Hope for People with Chronic Medical Conditions .

image 1: Disabled athlete  via Shutterstock; image 2: Man with spastic infantile cerebral palsy via Shutterstock; image 3: Senior adults via Shutterstock

Great Article. I loved it.

i am an author, i write books on disability and development in ZAMBIA- Africa

Great article, thank you!

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Recognising lived experience is essential to empowering disabled patients

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• Thomas Shakespeare , professor of disability research
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Peer networks are essential to support people with disability to live happy, autonomous lives, writes Thomas Shakespeare

Disability is not rare: 15% of the world’s population—more than a billion people—are affected by disability, according to the World Health Organization. 1

I have been researching, campaigning about, and living with disability for my whole life. A person who is born blind, develops autism or schizophrenia in youth, or becomes paralysed in mid-life probably experiences that difference evermore. They get to know their difference and what difference it makes to other people, and encounter barriers and discrimination in daily life. They become “experts by experience” and often activists for a world in which they fit better.

Disability usually presents a continuous series of small hurdles, whether bodily or social in nature. Disability is “adversity inoculation,” as psychologists put it. Day by day, we have to surmount difficulties, whether it is falling out of your wheelchair, dropping something, finding your way, or persuading someone to provide you with what you need.

Adversity makes you strong

Adversity is a bore. It grinds you down. But the experience of surmounting difficulties, and of succeeding against the odds, can be powerful. 2 It shows what you can achieve and can make you strong. Of course, in some cases, a person can be defeated: the difficulties are too great, the environment too hostile, the impairment too extensive. But people can survive and thrive—and report a high quality of life. 3

Patient empowerment can have a powerful effect on this experience of disability. Here I am talking in the broadest sense, about feeling good about yourself and having control over your life. Empowerment works best in groups. Coming together to help each other, to be inspired by what people with disabilities can achieve, to witness each other’s stories of hurdles overcome, is the best way. In-person is preferable, but even virtual groups can make a huge difference, whether through Zoom or an email discussion list.

I have seen this time and again in groups that I have belonged to—groups of people with dwarfism 4 and groups of people with spinal cord injury. 5 I learnt the most important lessons about daily life from other people who shared my condition, such as how to manage catheterization or how to put my wheelchair into a car. I have also seen this in groups I research with: groups of people with dementia, such as the DEEP (Dementia Engagement and Empowerment Project) network, 6 and people with disabilities in Africa. 7 People feel they still have something to contribute despite a diagnosis that at first felt like a death sentence. Life goes on.

Evidence and clinical practice

This doesn’t mean that doctors and other professionals are no longer needed: far from it. “Experts by training” know far more than I do about skeletal dysplasia, orthopaedics, or psychiatry. I turn to them to get answers which help me live my life with my disabilities better. They know the evidence and the clinical practice to help me manage my conditions.

My experience is always n=1. It is my experience, which makes it powerful, but also limited.

I see professionals for limited periods, maybe as little as 10 minutes. But I know whether I have a bladder infection long before the sample is tested because I know exactly how it feels. Moreover, I have a pretty good idea about how assistive technology or other fixes will work in practice. I want a partnership with my clinicians, collaborating on a better life for me and my peers.

A great doctor once said to me that she knew all about the neuromuscular genetic conditions in which she specialised. But she did not know all about the schools or welfare benefits or assistive technologies, which were of a greater importance to her patients. Living disability means living disability lifelong; it also means living every part of life with disability, in housing, education, employment, welfare, faith groups, and family life.

Empowerment is beautiful

When it comes to disability, patient empowerment can be beautiful. I notice how people sit differently after I explain to them that many of their problems are down to social barriers, not the disability itself. They leave the room differently from how they entered because of the power of this understanding of disability. 8 But we need to make sure that support groups achieve their constructive and problem solving potential, not lapse into criticism and moaning.

In many parts of Africa and in other low and middle income countries, disability can result in children being excluded from school and in family poverty. But I have also worked with many proud, self-reliant, and strong people with disabilities throughout the continent. They have had to rely on themselves and their networks because the state offers minimal help. Of course, we need better provision and services for everyone. But we also need to recognise that people can be successful despite disability. Nobody should be written off by their families, communities, or professionals.

People with disabilities need to access different ways of thinking, peer support groups, and that little bit of assistance to overcome their barriers. Professionals can help, by directing people towards good support groups and recognising lived expertise. The goal is for empowered individuals to lead better lives, supported by professionals.

Competing interests: I have read and understood the BMJ policy on declaration of interests and have no relevant interests to declare.

Provenance and peer review: Commissioned; not externally peer reviewed.

This article is part of a series commissioned by The BMJ for the World Innovation Summit for Health (WISH) 2022. Funding for the articles, including open access fees, was provided by WISH, which is an initiative of the Qatar Foundation. The BMJ peer reviewed, edited, and made the decisions to publish. The series, including open access fees, is funded by WISH. The steering committee members were Angela Coulter, Mark Barone, Michael Barry, Maria Hägglund, Karina Dahl Steffensen, and Mowafa Househ. Richard Hurley and Paul Simpson were the lead editors for The BMJ .

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ .

• ↵ WHO. World report on disability . 2011. https://www.who.int/publications/i/item/9789241564182
• Lupien SP ,
• Kondrak CL ,
• Albrecht GL ,
• Devlieger PJ
• Thompson S ,
• Shakespeare T ,
• Bickenbach J ,
• Officer A ,
• Von Groote P
• Houston A ,
• Mugeere A ,
• Nyariki E ,

The empowerment of women and girls with disabilities: Towards full and effective participation and gender equality

Publication year: 2018.

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It is estimated that more than one billion people in the world experience some form of disability. The average prevalence rate in the female population 18 years and older is 19.2 per cent, compared to 12 per cent for males, representing about 1 in 5 women.

Women and girls with disabilities face systemic marginalization and attitudinal and environmental barriers that lead to lower economic and social status; increased risk of violence and abuse, including sexual violence; discrimination as well as harmful gender-based discriminatory practices; and barriers to access education, health care, including sexual and reproductive health, information and services, and justice as well as civic and political participation. This hinders their participation on an equal basis with others.

This strategy document was developed to ensure a more systematic approach to strengthen the inclusion of the rights of women and girls with disabilities in UN Women’s efforts to achieve gender equality, empowerment of all women and girls, and the realization of their rights. The strategy aligns with UN Women’s Strategic Plan 2018–2021 and commitments made in the common chapter to the Strategic Plans of UNDP, UNFPA, UNICEF, and UN Women, and further builds upon UN Women’s work in the area of empowerment of women and girls with disabilities.

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Empowering Persons with Disabilities Through Training and Employment: A Case Study

Empowering persons with disabilities (PWDs) involves ensuring their independence and self-reliance by creating job opportunities for them. However, PWDs are marginalized when it comes to employment. In the Asia Pacific region alone, the unemployment rate for PWDs is 80% or more. One way to address this issue is to utilize social enterprise (a business for profit and social responsibility) as a mechanism for the inclusion of PWDs in the economy. This qualitative case study examined the effort of empowering PWDs through training and employment by "Handcrafted by Harl's," a social enterprise in Laguna, Philippines. The findings indicate a few things including the following: (a) A social enterprise was a viable an ethical mechanism for the inclusion of PWDs in the economy. (b) Mentoring was a successful way of training PWDs for skills development that promotes a sense of value. (c) A social enterprise could be an avenue for the empowerment of PWDs leading to their participation in socioeconomic activities if healthy conditions supporting their experiences on their psychological needs were provided. Finally, the result of this study supports findings of previous studies that suggest that disability is socially constructed.

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People with intellectual disabilities have existed throughout our world across human history and make up a part of all cultures, they represent a small section of the extremely wide variety of people in the human population at any one time yet they are still the most discriminated and stigmatised section of our society and are often the last within the community of disabled persons to receive attention (Paramenter, 2011). Research has shown us that people with intellectual disabilities are ‘able to’ and ‘want to’ work but cannot because of the barriers that they face. There has been a lot of emphasis in the recent years on the value of social enterprises in Ireland and their ability to be able to provide employment to individuals who are at a distance from the labour market. Using qualitative research methods, this study explores the potential for social enterprises to be able to support people with intellectual disabilities to overcome the barriers to employment that they experience. The research presents a sample of social enterprises in Ireland and Wales that are currently supporting people to overcome barriers to employment. Findings from the literature and case studies have shown that that our thinking on employment for people regardless of their ability or disadvantage must extend beyond the traditional and conventional opportunities which to date been offered in the competitive market and which do not offer adequate accommodations and supports. The research has demonstrated that social enterprises that have been designed specifically to support people with intellectual disabilities have more potential to support their employees to overcome the barriers to employment. The findings also warn of the dangers of establishing social enterprises which are nothing more than a modern version of the segregated sector of sheltered workshops and job enclaves.

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This study described and examined Human Resource Management practices on inclusive employment for Persons With Disabilities (PWDs) among selected Non-Government Organizations in the Philippines. There were 38 randomly selected Non-Government Organizations in the Philippines which participated in the study. Meanwhile, this study utilized descriptive correlational research. Survey-questionnaire and unstructured interviews were used as the main and secondary research tools of the study. Results revealed that Human Resource Management practices in the employment of Persons with Disabilities among selected Non-Government Organizations in the Philippines offered wide employment opportunities for PWDs. They were compensated equally based on the nature and accomplishments of their work. Hence, they were selected and recruited based on their potentials and skills while emphasizing the prevailing policies on inclusivity and equal work opportunities. Thus, NGOs provided efficient training and ...

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Social enterprises play an increasing role in providing employment opportunities for disabled people. This paper examines the implications of social enterprises’ market-based approach to disability inclusion, which is characterized by viewing disability as an asset rather than a limitation. Taking our inspiration from critical disability scholars who have pointed out that inclusion agendas produce disability as a distinct social reality, we use a performative lens to examine how social enterprises variously “do disability,” for instance, by defining where the potentials of disabled people lie and how best to promote them. Drawing on an ethnographic study of Magic Fingers, a Nepal-based enterprise that employs blind people as massage therapists, we identify entrepreneurial “doings” of disability that were guided by ideals of empowerment but that ultimately produced new and subtle forms of exclusion. By closely examining the case organization’s founding phase, as well as its practices of advertising, recruitment, and day-to-day management, we show how Magic Fingers commodified disability in novel ways, reinforced the notion of disability as a negative condition that must be “overcome” through work, and introduced new market-oriented evaluative distinctions between “more able” and “less able” disabled individuals. By exploring and evaluating these effects, this paper draws attention to the ways in which social enterprises, while challenging deficit-oriented representations of disability, can paradoxically solidify disability as something profoundly “other.”

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Sugeng Eko Putro Widoyoko

Persons with disabilities are often regarded as unproductive citizens, unable to carry out their duties and responsibilities so that their rights are ignored. Indonesia is a country that has various risks of disability due to various causes, such as prolonged armed conflict, chronic diseases and natural disasters in various areas such as earthquakes, flash floods, landslides and so on. People with disabilities are under-represented in the workforce, often facing discrimination by employers, and often not served and protected effectively. To support the active participation of people with disabilities in society and the economy, this paper aims to explore the role of entrepreneurs with disabilities and the entrepreneurship model of people with disabilities in the study area. We explore entrepreneurial activities between people with disabilities, theoretical foundations, provide entrepreneurial benefits and challenges for people with disabilities, and propose policy recommendations fo...

Teorija in praksa

On the basis of a systematic review of the literature, this article addresses the issue of employment of people with disabilities and analyzes current trends in disability employment to classify employment in social enterprises in the typology of employment models for people with disabilities. For the purpose of classification, the article also identifies individual models of disability which coincide with the characteristics of employment in social enterprises. The upgraded typology is the main contribution of the article; it could serve as an important classification tool for individual approaches to this issue, and thus help to develop appropriate policies for the employment of people with disabilities through a comparative analysis of individual countries. Keywords: employment, typology of employment models, people with disabilities, social enterprises, work-integration social enterprises, models of disability

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IntroductionOne of the major challenges that persons with disabilities (PWDs) are facing globally is unemployment. The challenge is attributed to systems that are not built with inclusivity in mind by employers. As such, the work of inclusion is not inviting PWDs to do more but to make a difference through social support. Most research on inclusion in the employment of PWDs in low-income settings has been concentrated upon the labor “supply” side, and to the best of our knowledge, no specific studies moved toward inclusion in employment issues from the employers’ perspective in informal settlements. Notably, our research question is: “what would it take to socially support employed PWD in informal settlements building from the perspectives of employers.”MethodsThis paper used data from in-depth interviews with 38 service providers in the education, health, water, sanitation, and solid waste management sectors and two sub-county officials in two informal settlements in Nairobi, Kenya...

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Empowering Persons with Disabilities Strengthens Human Solidarity for Everyone, Secretary-General Tells Rehabilitation International World Congress

Empowering Persons with Disabilities Strengthens Human Solidarity for Everyone, Secretary-General Tells Rehabilitation International World Congress   Following are UN Secretary-General Ban Ki-moon’s remarks, as prepared for delivery, to the 22 nd Rehabilitation International World Congress, in Incheon, Republic of Korea, 30 October: Before I begin my remarks I want to say a few words about the storm now hitting the east coast of the United States.  I am closely monitoring the unfolding developments in New York City and elsewhere, and my thoughts are with all those who are enduring a very difficult night through a treacherous storm.  The damage has affected millions of families, including the United Nations family. I also want to express my deepest condolences and solidarity with the people of Haiti and elsewhere in the Caribbean who suffered through the fury of Hurricane Sandy, which claimed dozens of lives and caused untold damage. I am receiving regular reports on the situation from the United Nations team in New York who are in touch with local officials.  I plan to be on the ground tomorrow.  I know that you join me in wishing all those who have been in the path of this storm our thoughts at this difficult time. I am pleased to meet with all of you on an issue that is very close to my heart.  The United Nations has a long history of advocating for the human rights of persons with disabilities.  Rehabilitation International has always been one of our most important partners in standing for their empowerment and inclusion in society.  I am proud to work closely with all of you. Yesterday, I gave a speech about the power of sports to unite people, communities and nations.  When I was preparing for that talk, I started reading letters from young people to Olympic athletes.  They were published as part of a contest run by a United Nations agency. I was especially moved by a letter from a young girl to a Paralympic gold-medal champion.  The girl wrote, “Watching as you overcome the difficulties of life, reaching for new victories and new heights in sports, I derive strength and inspiration.” I share this story because I want to focus today on how much persons with disabilities can contribute to society.  Imagine how much stronger the world would be if the rights of the more than 1 billion persons living with disabilities in the world would be respected, protected and fulfilled.  Only when they have the opportunities they deserve, can they generate ideas, products and inspiration for millions of other people. More and more Governments understand this.  We have made remarkable progress in recent years — at least on paper.  The Convention on the Rights of Persons with Disabilities has marked a major step forward.  The Convention embodies a paradigm shift, from a charitable or medical approach to disability to one which is firmly rooted in human rights.  It establishes that discrimination against any person on the basis of disability is a violation of the rights, inherent dignity and worth of the human person.  And it obliges States parties to ensure and promote the full realization of all rights of persons with disabilities in all aspects of society and development.   This treaty is the ideal.  However, there is a major challenge in bridging the gap between policy and practice.  There are now 125 States parties.  I call on all countries to take action to make the goal of the Convention a reality on the ground. The reality is persons with disabilities are more likely to live in poverty.  They face many obstacles, including stigma, invisibility and abuse.  They have a harder time in school and a tougher time finding jobs.  They are denied their rights to vote, move freely, enjoy social protection, access justice and choose medical treatment.  Women with disabilities face particular challenges and need to be empowered.  Disabled children especially need our protection and support.   We all know this situation has to change — for persons with disabilities and for our world.  When we empower persons with disabilities, we strengthen human solidarity for everyone. The Convention calls for breaking down barriers:  physical obstacles, negative attitudes and institutional red tape that affect persons with disabilities and their families.  This is a matter of human rights and a requirement for reaching the Millennium Development Goals. While we are racing to achieve the Millennium Development Goals, we are also looking beyond the 2015 deadline.  We have an historic opportunity now to create a post-2015 development agenda that incorporates the rights, concerns and contributions of persons with disabilities. The “Rio+20” United Nations Conference on Sustainable Development highlighted the link between disability and achieving equitable and inclusive progress.  And the Rio+20 Outcome stresses the importance of accessibility for persons with disabilities in order to achieve the future we want. The digital revolution has opened new possibilities for persons with disabilities.  We have to ensure that access for them includes technological access. This meeting is an important step on the road to the future. I congratulate the Government of Korea, the Asia-Pacific disability community and Rehabilitation International for proclaiming the third Asian and Pacific Decade of Persons with Disabilities for the years 2013 to 2022.  I especially express my warm appreciation to the persons with disabilities who have been involved in these events.  They should always be leaders in our campaign for the equality and dignity they deserve. I thank the Republic of Korea for hosting a series of high profile events on disability at this time, including the 2012 Asia-Pacific Disability Forum Conference and the 2012 Asia-Pacific Disabled People’s International Assembly.  These are important gatherings. I hope these meetings will feed into the work of the United Nations and that all of you will engage closely with us.  Next year, the United Nations General Assembly will hold a high-level meeting on disability and development.  This is an opportunity for all countries to renew their resolve to empower persons with disabilities.  This is a chance for all countries to ensure that they enjoy the full range of human rights — civil, cultural, economic, political and social — on an equal basis with others.  Together, we must take concrete action to achieve a just and equitable society and development for all.  I count on Rehabilitation International to be part of our global effort to advance this cause. Last week we celebrated United Nations Day with a beautiful concert at the United Nations.  Our star performer was the legendary singer Stevie Wonder.  He is a global superstar — and a United Nations Messenger of Peace.  Stevie Wonder devotes a great deal of his work at the United Nations to promoting the rights of persons with disabilities.  He is blind — but he has profound vision. Stevie Wonder once said:  “I know what I can do.  I know what I have — but what about those persons that don’t have?”  I am really moved by his compassion. The spirit to care for others should guide us.  This is a rewarding way to live — and the sure path to our common goals. * *** * For information media • not an official record

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Essay On Empowerment Of Disabled

This sample essay on Essay On Empowerment Of Disabled provides important aspects of the issue and arguments for and against as well as the needed facts. Read on this essay’s introduction, body paragraphs, and conclusion.

It’s not just the right of able- bodied people, say something positive; catch them doing something positive. Assist people in developing new skills and competencies by providing emotional and practical support. * Ensure they actively participate in the important decisions affecting their lives by first providing them with information and possible choices.

* Recognize and respect a person’s individual, cultural and religious differences.

This is particularly important as a person who has a disability and has religious or cultural differences is often doubly disadvantaged. 2. How can we encourage colleagues to promote the independence of people? * Workers attitudes and awareness of some of the restrictions that re faced by people with a disability on a daily basis. 3. List 2 support strategies you would use to promote a person’s independence, taking differences into account.

* Be flexible and adapt to changing circumstances.

It is important not too rigid and if necessary to adapt to changes in circumstances in the interests of allowing people with disabilities to exercise their rights and independence. * Look for opportunities to provide new experiences. Clients should be encouraged with a diverse range of experiences to develop skills that will help them gain independence and exercise their rights. 4. In your own words explain the importance of advocacy in a Worker/person with a disability relationship.

Proficient in: Human Rights

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Because workers have an important role to play in promoting and facilitating the rights and interests of the people with disability. Workers have to realize and develop their capacity for self determination to the maximum possible extent, by encouraging confidence and provide opportunities for decision making, self expression and self advocacy. 5. How could you support a person to make more choices/decisions within heir current environment? * By giving them more information and the experience of the range of choices and options that are available to them.

How To Empower People With Disabilities

Do not pressure the person being supported about what is their decision and give them time to think and decide. 6. Explain how the Federal Disability Services Act (1986) looks at the rights of people with a disability and assists them to achieve positive outcomes. * Federal Disability Services Act (1986) explains the right of the people with disabilities to be treated as equal, respect for their human worth no matter hat culture, race, sex, whatever the origin, type and degree of disability have the same fundamental rights as other members of Australian society.

People with disabilities have the same right as other members of Australian society to services which will support their attaining an acceptable quality of life. * In assisting them to achieve positive outcome the set-vices focus on the achievement of the positive outcomes for people with disabilities, such as increased independence, employment opportunities and integration into the community. 7. What would happen in an organization to a worker when there has been a serious breach of standard operating procedures or protocols? List your findings. The action must be stopped immediately, the needs of a person with a disability are paramount, anything they require must be dealt with first, then the incident must be reported to the supervisor and an incident report completed. The supervisor would then commence mandatory reporting as they are required to, which may include involving the police. * It is the policy of the company that all employees should achieve and maintain agreed tankards of conduct, attendance and performance and that everything within reason will be done to help all employees achieve these standards.

If these standards are not achieved and disciplinary action has to be taken against employees it should: * Be undertaken only in cases where good reason and clear evidence exist; * Be appropriate to the nature of the offence that has been committed; * Be demonstrably fair and consistent with previous action in similar circumstances; * Take place only when employees are aware of the standards that are expected of them or the rules with which they are required o conform; * Allow employees the right to be accompanied by a representative or colleague of their choice during any formal proceedings; Allow employees the right to know exactly what charges are being made against them and to respond to those charges. * Allow employees the right of appeal against any disciplinary action through the Personal Grievance procedure under the Employment Relations Act 2000. (Internal appeal system? ) 8. In your own words describe what the ‘cycle of positive expectations’ can do for a person with a disability. * Cycle of positive expectation is where the u port worker provides the best of the quality of life to the person with disability that being supported.

The ability to understand the needs of the person with disability and respect what their decisions would have a positive outcome to the person with disability. 9. Name one Act, Regulation, or Policy that is empowering to a person with a disability * Federal Disability Services Act (1986) 10. Explain how you would assist a person with a disability to communicate their needs, and requirements. * Approach the individual by talking to them, use their name and ask what assistance they may require. Using cue * using a verbal prompt * Using a visual prompt * Provide physical assistance Task 2 Marina has a disability and until recently has displayed no real interest in boys. She is 29 years old and lives in institutional accommodation but has freedom to come and go as she wishes.

You know that there are high rates of sexual abuse against people with disabilities. How would you support the following sexuality and identity needs for Marina? * Love and affection * Relationships and intimacy * Appropriate touch * Physical appearance * Need for privacy and discretion Access to assisted/protective devices * Personal safety * Sexual health * Contraception * Pregnancy, childbirth and parenting * Depends on her intellectual ability, you have to speak to her in her level of understanding. You can probably use flash cards, charts or short films to demonstrate appropriate social norms and behavior and show her what to do if these norms were not followed.

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10 reasons why we need to empower persons with disabilities.

Empowerment involves a guide to influencing local services to inform, support, and enable persons with disabilities to influence local decision-making processes, taking an active part in the services they receive.

Having a voice and taking control of their lives is essential. It helps persons with all types of disabilities achieve their maximum sustainable independence level as contributing, responsible and equal participants in society.

Here are ten reasons why we need to empower persons  with disabilities

1. To curve a path to a better society

When we help others we help them pursue and achieve their goals, we play a big part in social change and growth. By providing social services like proper health care for persons  with disabilities, we can ensure that more people enter the workforce. This collective effort to assist persons  with disabilities ultimately contributes to the economy’s growth and improves the overall social setting.

2. To promote tolerance and mutual respect among persons  with disabilities and those without

Frankly, persons  with disabilities face inequality and bias due to their perceived limitations. That’s why it is crucial to inform and educate the public about multiple disabilities and how to interact with persons with disabilities respectfully. This civil education can be done through campaigns and seminars.

With the proper information, more people will be tolerant and kind to persons with disabilities, creating an environment of mutual respect. Besides, this enlightenment will lead to more accommodating attitudes in all sectors allowing more persons  with disabilities to contribute to societal growth.

3. To reduce and eventually eradicate the negligence of persons with disabilities

There are many types of disabilities affecting people in different ways. Sadly, others are often not aware of a person's disabilities. In cases where people are uninformed of various kinds of disabilities, affected persons can experience neglect.

Empowerment of persons  with disabilities is essential, as support can be given to the affected persons and their families. This can be done by creating programs to provide medical care and shelter for neglected persons with disabilities.

4. To help nurture responsible individuals that contribute to society

Disabilities do not make a person a less functional member of the community. By giving equal opportunities and the corresponding respect, we grow a sense of confidence in the persons  with disabilities and cultivate a sense of belonging. This makes for positive growth attitudes, and despite any disability, a person will pursue and work on their goals, thus contributing positively to society.

5. Empowering persons with disabilities impacts the economy positively

By supporting the programs that provide persons  with disabilities with skills and work opportunities, tax rates may ultimately become lower while persons  with disabilities will also feel more empowered. This not only improves the economy; it also upgrades the living standards.

6. To help people with hidden disabilities to come out and get proper assistance

Some people are living with disabilities that they either hide or don’t even know they have. This is quite unfortunate. That’s why we need to raise awareness of such disabilities and create platforms to address these issues and empower these people.

Since people with such abilities may need more care, proper awareness should be raised to promote relevant assistance.

7. To bridge the gap between the minorities for total equality

To empower persons  with disabilities, we need to teach each other the importance of unity as human beings regardless of whatever limitations. Advocating for the rights and equal treatment of people with disabilities aims at creating a peaceful world with tolerance and acceptance.

What’s more, acts of kindness unify all human beings, regardless of physical or mental limitations. When we work together to empower those who cannot stand up for themselves, we come closer and make it a better world.

8. To tackle and minimize cases of abuse on persons with disabilities

In some third world countries, news about people exploitation of people with disabilities for fraud and other crime have been prevalent. By empowering people with disabilities, we can uncover such awful acts and protect potential victims in the process.

The problem can also be tackled by passing laws that protect people with disabilities and punish those who abuse and exploit them. Representatives of people with disabilities should be given the mandate to run programs that ensure that such cases do not occur.

9. To provide easy access to all services

Persons with disabilities need access to the same services and opportunities as those without a disability. For instance, they need to go to school, access health care, and earn an income.

They also need access to specific services like rehabilitation and assistive devices such as wheelchairs or braille materials.

By including the persons  with disabilities in more decision making, we provide them with an opportunity to access these services with ease, thus improving lives.

10. To inform persons with disabilities of their rights and to ensure they are protected

Empowering people with disabilities also involves teaching them of their rights and privileges, teaching them about the law, and generally giving relevant information concerning aspects of their well-being. Most people with disabilities, having been excluded from many legal decision-making processes, are not aware of their rights and have become subject to abuse and exploitation.

To contribute even more significantly to the empowerment of people with disabilities, governments should include representatives of the minorities in law-making processes and general decision-making.

The opportunities brought about by empowerment programs worldwide aim to create an all-inclusive society where persons with disabilities are afforded the same respect, love, and kindness as everybody else.

If persons  with disabilities can raise their voices and demand their rights , the impact could be truly transformative. But we must all contribute.. Therefore, empowerment is crucial as it unlocks the potential of persons with disabilities and delivers real change in society.

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Autism Advocacy: Inclusion, Empowerment, and Human Rights

• By: Annie Kent, MA Mental Health Systemic Advocate and Educator/Writer
• January 2nd, 2023
• actually autistic , advocacy , diversity , empowerment , exclusion , human rights , identity , inclusion , language , Winter 2023 Issue
• 2519    0

“Autism isn’t this strange alien thing, it’s just a different way of thinking and experiencing the world. Some of us will find ourselves more or less compatible with modern living […]

“Autism isn’t this strange alien thing, it’s just a different way of thinking and experiencing the world. Some of us will find ourselves more or less compatible with modern living than others, we will all have different needs…but autism is not terrifying or awful, nor is it marvellous and fabulous, it just is” (Rhi).

Annie Kent, MA

While autism has existed as a diagnosis since 1933, the only thing new about it is its definition as a neurodiversity. Originally regarded as an intellectual impairment, and stigmatized by society, attitudes toward Autism Spectrum Disorder are changing. The disability empowerment movement, among other human/civil rights campaigns, led the way to looking at autism through the eyes of autistic people, but full inclusion is only on the horizon. This article approaches the topic of autism advocacy from the standpoint of the continued exclusion of Autistic people in this era of diversity.

Early Recognition in America

“ Autism may have been recognized in the USA as early as 1846 by a phrenologist conducting a census on people who were then known as ‘idiots.’ One such man, 59-year-old ‘Billy,’ was considered intellectually incapacitated, although in many respects he demonstrated superior cognition. His verbal abilities were severely limited, but his musical pitch was perfect, and he knew more than 200 tunes. And there were others whose combination of skills, strengths, and deficits puzzled the examiners…If Billy were alive today, his disability, and that of others documented in 1846, would likely be diagnosed as autism” (Donvan and Zucker).

Autism Is Not a Disability

Autism is typically defined as a developmental disorder of variable severity, including difficulties with social interaction and communication, and restricted or repetitive patterns of thought and behavior. This description characterizes autism as an aberration instead of a range of differences in brain function and behavioral traits.

Diversity is defined as being composed of differing elements or qualities (Diversity), while a disorder is an abnormal state involving dysfunction, distress, and deviance. Current thinking favors viewing autism as a psychological diversity, innate to human beings.

Human Rights

The Americans with Disabilities Act, 1990, prohibits discrimination against people with disabilities in public accommodations, employment, transportation, government services, and telecommunications. The intent of such legislation was, and is, to ensure that an individual’s abilities, and not their impairments, are the focus of decisions affecting their lives (Guide to Disability Rights Laws | ADA.Gov).

In Canada, the laws protecting people with disabilities include The Canadian Charter of Rights and Freedoms and The Canadian Human Rights . In 2010, Canada ratified the UN Convention on the Rights of Persons with Disabilities . Yet decades later, while the law dictates the availability of accessible services, advocates are still fighting for adequate funding of home and community-based services for children and adults.

Barriers to Inclusion

In 2016, the Province of Ontario eliminated government-funded access to behavior therapy for autistic children aged five and over. A public outcry forced the government to reverse its decision, announcing $200 million in funding over the subsequent four years.

In 2019, Member of Provincial Parliament Amy Fee submitted an article to the Toronto Star criticizing the state of autism services: “Parents [are] overcome with emotion just talking about their daily struggles to find help… Most of the families I spoke with…don’t understand why a small number of children get service, while the majority are on wait-lists… There’s a wait-list to receive a diagnosis, a wait-list to access provincial funding and another for private providers. All this waiting is adding to their stress and keeping children from accessing much needed therapy.”

There are still over 54,000 children registered in and waiting for core services through Access OAP (Ontario Autism Program) .

What Do Inclusion and Empowerment Mean for Autistic People?

Inclusion is the practice of providing equal access to opportunities and resources for people who might otherwise be excluded or marginalized. Inclusive organizations reach out to people with disabilities, seeking to understand their differences, and fostering a sense of belonging.

Benefits of Inclusion

Inclusion leads to empowerment, which provides:

• Greater opportunities for friendships
• Increased social networks
• Greater respect for others
• Shared learning opportunities
• Reduced isolation
• Higher academic achievement
• Access to a wider range of school/employment resources
• Increased collaboration and participation (CLT Development Team)

While accommodating the needs of autistic people can be legally decreed, as long as autism misconceptions remain, many of us will face significant hardships. According to a UK study led by Simon Baron-Cohen, director of the Autism Research Centre at the University of Cambridge , almost half of autistic people lack sufficient money to meet basic needs, whereas one quarter of neurotypicals struggle with poverty (Salman).

My own experience with finding reliable employment is that I’m either overqualified or underqualified for jobs I apply for. Differences in the way I think, and process information diminish employers’ judgments of my suitability for jobs.

Along with Autism and ADHD, I have mental health issues stemming from lack of early diagnosis, being forced to live in a world that is not designed for me – or for other neurodivergent people. Having to mask or camouflage as “normal” to pass as neurotypical is physically and emotionally draining.

Words of Empowerment: Sticks, Stones, and Slurs

It is too easy to speak without thinking, to not genuinely listen and connect with people. When words are used in the wrong way, or uttered with the wrong tone, they can cause great psychological pain. Words hurtful to autistics include risk, disease, disorder, impairment, deficit, pedantic, and obsession.

Person-First Language

A significant component of accessibility for people with disabilities is Identity . Historically, people have been referred to as their impairment, which destroys human dignity. For example, we’ve referred to a schizophrenic, blind man, deaf-mute, as opposed to putting the person first, i.e., person with schizophrenia, or a person with visual (or auditory/hearing ) impairment. We still pity the mobility impaired as confined to a wheelchair rather than empowered to be more independent (Kent, 2003).

We now believe that disability doesn’t define a person’s identity, and people are more than their disability. Many autistics don’t feel impaired. We identify with our uniqueness and often prefer “Autistic Person” over “Person with Autism.”

Why Inclusion and Empowerment are Essential

Diagnosing autism has long been a matter of experts observing a person and attempting to match what they say and do against established criteria. While enormous gains have been made toward autism awareness, it is past time to create a world that autistics understand, embrace, and ultimately can engage with. We are human beings; genetically and neurologically different but thinking and feeling folks with strengths and challenges outside the “norm.” People tend to fear divergence from “normal,” and that fear can lead to framing those who are different as lesser beings.

Pathways to Empowerment

The theory of neurodivergence is replacing the concept of autism as a disability or disorder. Empowerment of autistic children and adults comes from presuming intelligence and teaching to our differences. Some of us exhibit behaviors deemed “undesirable,” even bad. But those behaviors might be the only means some autistics have to convey their needs or distress.

Understanding autism necessitates entering our world, not forcing us to enter yours. Validate self-advocates and seek knowledge about the autistic mind from those with autism. Make the effort to forge bonds with us; seek to understand our world, our reality, and how we find meaning. Get to know us as fellow human beings, worthy of dignity.

“Inclusion is intentional. It is about identifying and removing barriers so that everyone can participate to the best of their ability” ( The Inclusive Class ).

Annie Kent, MA Psychology, spent two decades working in public sector disability, mental health, and addictions advocacy and education. Diagnosed with three closely related categories of neurodiversity, a lack of awareness and understanding led to Autistic burn-out and retirement from the field. She remains an active advocate, engaging remotely with several Autism, ADHD, and Disability organizations and forums. For more information, email Annie at [email protected] .

“Canadian Human Rights Act/Loi Canadienne Sur Les Droits de La Personne.”  Laws-Lois.Justice.Gc.Ca/ , Minister of Justice, 31 Aug. 2021, https://laws-lois.justice.gc.ca/PDF/H-6.pdf .

CLT Development Team. “The Benefits of Inclusion in the Classroom | Community Living Toronto.”  Community Living Toronto | Supporting Rights and Choices for People with an Intellectual Disability , https://cltoronto.ca/the-benefits-of-inclusion-in-the-classroom/ . Accessed 23 Nov. 2022.

Diversity. (n.d.) Merriam-Webster. In Merriam-Webster’s online dictionary  (11th ed.). Retrieved November 23, 2022, from https://www.merriam-webster.com/dictionary/diversity

Donvan, John, and Caren Zucker.  Smithsonianmag.Com , Jan. 2016, https://www.smithsonianmag.com/science-nature/early-history-autism-america-180957684/

Fee, Amy. “Waitlist-Plagued Ontario Autism Program Needs a Complete Rethink.”  Thestar.Com , 13 Feb. 2019, https://www.thestar.com/opinion/contributors/2019/02/04/waitlist-plagued-autism-program-needs-a-rethink.html .

“Guide to Disability Rights Laws | ADA.Gov.”  ADA.Gov , 22 Nov. 2022, https://www.ada.gov/resources/disability-rights-guide/ .

Kent, Annie (2003) In our shoes: A guide to disability etiquette and sensitivity. Independent Living Resource Centre, Thunder Bay, Ontario

Kupfer, Matthew, and Kristy Nease. “Wynne Government Backtracks on Controversial Autism Funding Change.”  CBC.Ca , 28 June 2016, https://www.cbc.ca/news/canada/ottawa/autism-therapy-funding-restore-ontario-1.3655362 .

Rhi. “Ten Things Autism Isn’t.”  Researchautism.Org , http://researchautism.org/ten-things-autism-isnt/ . Accessed 23 Nov. 2022.

Salman, Saba. “Simon Baron-Cohen: ‘Neurodiversity is the next frontier. But we’re failing autistic people.’”  The Guardian , https://www.theguardian.com/society/2019/oct/02/simon-baron-cohen-autism-neurodiversity-brains-money. Accessed 23 Nov. 2022 .

“The Canadian Charter of Rights and Freedoms.”  Canada.ca , Government of Canada, 1998, https://www.justice.gc.ca/eng/csj-sjc/rfc-dlc/ccrf-ccdl/ .

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The United Nations Partnerships on the Rights of Persons with Disabilities (UNPRPD) funds disability inclusion initiative in Sri Lanka

Inception phase to reach 30 stakeholders from across the country

May 28, 2024

L to R: Mr. Marc-André Franche, Resident Coordinator, UN in Sri Lanka; Hon. Anupa Pasqual, State Minister of Social Empowerment; and Ms. Azusa Kubota, Resident Representative, UNDP in Sri Lanka at the opening session.

28 May 2024, Negombo, Sri Lanka:  Sri Lanka ratified the United Nations Convention on Rights of Persons with Disability (CRPD) in 2016 and was invited to implement the UNPRPD Fund Inception Phase, in 2023.

Through the United Nations Partnership on the Rights of Persons with Disabilities (UNPRPD) Fund, the United Nations in Sri Lanka is implementing an initiative at a national level, with technical lead the United Nations Development Programme (UNDP) in Sri Lanka. The UNPRPD project is a collaboration with participating agencies UNICEF, ILO, OHCHR, UN Women, WHO, WFP, UNDP, UNICEF, UNV and UNFPA. As a key activity of the inception phase of the project, an induction training reaching 30 stakeholders comprising representatives from government, disabled person organizations, and civil society organizations engaged in disability inclusion, kick-started in Negombo, on 14 May 2024, with the participation of high-level representatives including Hon. Anupa Pasqual, State Minister of Social Empowerment; Mr. Marc-André Franche, Resident Coordinator, UN in Sri Lanka; and Ms. Azusa Kubota, Resident Representative, UNDP in Sri Lanka.

Sri Lanka has its unique challenges in transforming the CRPD into concrete policies, systems, programs, and services that uphold the rights of persons with disabilities and result in real changes in their lives. To respond to gaps in CRPD implementation, the UNPRPD Fund adopts a multi-sectoral approach that focuses on the preconditions for disability inclusion and seeks to improve and increase the implementation of disability-inclusive SDGs at the country level by providing fundamental support to the UN’s collective response to address national priorities and gaps concerning persons with disabilities in their national planning to advance the SDGs.

Commenting on the initiative, Hon. Anupa Pasqual, State Minister of Social Empowerment noted, “There is a need to revamp Sri Lanka’s education system to be more inclusive and considerate of the needs of PWDs, while also exploring avenues to make Sri Lanka an accessible destination for tourists with disabilities. The Government of Sri Lanka is working to create an enabling environment across policy-making, livelihood interventions, educational reforms and accessibility, and we are grateful to the support of the United Nations in Sri Lanka through initiatives such as the UNPRPD to work towards a more inclusive country.”

Highlighting the UN’s role, Resident Coordinator of the United Nations in Sri Lanka, Marc-André Franche stated, “The CRPD is more than just a declaration; it requires Sri Lanka to actively engage in efforts to ensure that people with disabilities enjoy full equality under the law. This training provides a platform for collaborative efforts between the government, civil society and UN entities to identify and overcome the challenges that hinder the effective implementation of the Convention in Sri Lanka.”  

The induction training was designed to be a standardized training module that would provide stakeholders with foundational knowledge on CRPD, disability-inclusive SDGs and UNPRPD's Strategic Operational Framework (SOF), with training manuals also being made available in local languages and accessible format. The training's main objective was to ensure that stakeholders are informed and prepared to participate in subsequent activities.

Commenting on the outstanding participation at the induction training, UNDP Sri Lanka’s Resident Representative, Ms. Azusa Kubota stated "The full operationalization of the CRPD is key for Sri Lanka to achieve a society where inclusivity is the norm, and persons with disabilities have the necessary infrastructure and policy framework that allows meaningful and complete integration into mainstream society. To this end, as the designated Disability Champion of the United Nations Country Team, I would like to reaffirm our commitment to changing mindsets, attitudes and societal perceptions towards persons with disabilities.”

The induction training will be followed by a situational analysis of the rights of persons with disabilities to identify priorities for disability-inclusive development and support the full and effective implementation of CRPD norms and achievement of inclusive SDGs, in Sri Lanka.   

Legacy of Empowerment: Cesar Chavez’s Impact on Labor Rights and Social Justice

This essay about Cesar Chavez’s enduring legacy in championing labor rights and social justice illuminates his journey from humble beginnings to becoming a prominent advocate for farmworkers’ rights. Through nonviolent resistance and grassroots organizing, Chavez empowered marginalized communities, notably through the landmark Delano Grape Strike. His vision extended beyond labor rights, addressing broader social injustices, leaving an indelible mark on American society. Chavez’s influence persists through organizations like the United Farm Workers, inspiring a new generation of activists to continue the fight for empowerment and equality.

How it works

In the annals of history, certain individuals emerge as beacons of empowerment, guiding movements toward justice and equality. Cesar Chavez stands tall among these luminaries, his legacy etched in the struggle for labor rights and social justice. Born into humble beginnings in 1927, Chavez rose to prominence as a fervent advocate for the rights of farmworkers, leaving an indelible mark on American society.

At the heart of Chavez’s mission was the pursuit of dignity and fair treatment for agricultural workers, who toiled under oppressive conditions, often facing exploitation and abuse.

As a young man, Chavez experienced firsthand the hardships endured by farmworkers, witnessing their plight and feeling compelled to act. Heeding the call to action, Chavez co-founded the National Farm Workers Association (NFWA) in 1962, laying the foundation for a grassroots movement that would resonate across the nation.

Central to Chavez’s approach was nonviolent resistance, inspired by the teachings of Mahatma Gandhi and Dr. Martin Luther King Jr. Embracing the principles of civil disobedience and peaceful protest, he led strikes, boycotts, and marches to challenge the injustices perpetrated against farmworkers. Through these acts of collective resistance, Chavez empowered farmworkers to assert their rights and demand better working conditions, igniting a spark of hope in communities long marginalized and overlooked.

One of Chavez’s most notable achievements was the establishment of the Delano Grape Strike in 1965, a watershed moment in the struggle for labor rights. Sparked by the mistreatment of Filipino grape workers, the strike grew into a nationwide boycott of table grapes, galvanizing support from consumers, activists, and sympathetic allies. This grassroots campaign, known as the Delano Grape Strike, captured the attention of the nation, shining a spotlight on the injustices faced by farmworkers and forcing growers to reckon with their exploitative practices.

The success of the Delano Grape Strike catapulted Chavez and the NFWA onto the national stage, propelling their cause into the mainstream consciousness. In 1966, the NFWA merged with the Agricultural Workers Organizing Committee (AWOC) to form the United Farm Workers (UFW), solidifying Chavez’s leadership role in the burgeoning labor movement. Under his guidance, the UFW continued to wage battles for fair wages, improved working conditions, and protections for farmworkers, cementing Chavez’s legacy as a champion of social justice.

Beyond his advocacy for labor rights, Chavez recognized the interconnectedness of social issues, addressing systemic injustices that perpetuated poverty and inequality. He spoke out against discrimination, inequality, and environmental degradation, recognizing the intersectionality of struggles faced by marginalized communities. Chavez’s vision extended beyond the fields, encompassing broader societal reforms aimed at uplifting the most vulnerable members of society.

Chavez’s legacy extends far beyond his lifetime, his impact reverberating through generations of activists and advocates who continue to draw inspiration from his example. The United Farm Workers, the organization he co-founded, remains a potent force in the fight for agricultural labor rights, carrying forward his vision of empowerment and solidarity. Chavez’s teachings continue to resonate with a new wave of activists, who seek to address contemporary challenges through the lens of social justice and collective action.

In recognition of his contributions, Chavez has been immortalized in the pantheon of American heroes, his name synonymous with the struggle for justice and equality. His birthday, March 31st, is celebrated as Cesar Chavez Day in several states, a testament to his enduring legacy and influence. Schools, parks, and streets bear his name, serving as reminders of his enduring impact on American society.

As we reflect on the legacy of Cesar Chavez, we are reminded of the power of individuals to effect change, even in the face of seemingly insurmountable odds. Chavez’s life serves as a beacon of hope for those who dare to challenge injustice, reminding us that through unity, perseverance, and unwavering dedication, we can bend the arc of history toward justice. In honoring his memory, we recommit ourselves to the timeless pursuit of empowerment, solidarity, and social justice for all.

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Legacy of Empowerment: Cesar Chavez's Impact on Labor Rights and Social Justice. (2024, Jun 01). Retrieved from https://papersowl.com/examples/legacy-of-empowerment-cesar-chavezs-impact-on-labor-rights-and-social-justice/

"Legacy of Empowerment: Cesar Chavez's Impact on Labor Rights and Social Justice." PapersOwl.com , 1 Jun 2024, https://papersowl.com/examples/legacy-of-empowerment-cesar-chavezs-impact-on-labor-rights-and-social-justice/

PapersOwl.com. (2024). Legacy of Empowerment: Cesar Chavez's Impact on Labor Rights and Social Justice . [Online]. Available at: https://papersowl.com/examples/legacy-of-empowerment-cesar-chavezs-impact-on-labor-rights-and-social-justice/ [Accessed: 4 Jun. 2024]

"Legacy of Empowerment: Cesar Chavez's Impact on Labor Rights and Social Justice." PapersOwl.com, Jun 01, 2024. Accessed June 4, 2024. https://papersowl.com/examples/legacy-of-empowerment-cesar-chavezs-impact-on-labor-rights-and-social-justice/

"Legacy of Empowerment: Cesar Chavez's Impact on Labor Rights and Social Justice," PapersOwl.com , 01-Jun-2024. [Online]. Available: https://papersowl.com/examples/legacy-of-empowerment-cesar-chavezs-impact-on-labor-rights-and-social-justice/. [Accessed: 4-Jun-2024]

PapersOwl.com. (2024). Legacy of Empowerment: Cesar Chavez's Impact on Labor Rights and Social Justice . [Online]. Available at: https://papersowl.com/examples/legacy-of-empowerment-cesar-chavezs-impact-on-labor-rights-and-social-justice/ [Accessed: 4-Jun-2024]

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My son is profoundly autistic. Please don’t say he’s merely ‘neurodiverse.’

Advocates are fighting to eliminate terminology that accurately describes my son and thousands of people like him — who can’t speak up for themselves..

I t was pure coincidence that I happened upon the bloody site. Hoping to surprise my son, I drove to his favorite walking trail, along a lakefront, where I caught sight of police officers in a tense confrontation. Three officers stood side by side in an impenetrable wall while instructing someone splayed out and writhing on the ground. I hope Zack doesn’t get distracted by this scene , I thought.

As I neared the trail, I saw Zack’s aide, slouched inside her car, fully absorbed in texting. She was supposed to remain beside him at all times, but he was not with her. I called out to her, “Where’s Zack?” as my throat tightened with the realization he was nowhere in sight. I began sprinting toward the police officers — only to discover with mounting horror that Zack was the scene they were dealing with.

He was ravaging his forearms with deep, mutilating bites, thrashing angrily on the ground, and then rising to charge at the officers, who patiently but sternly reminded him to “stay seated” and repeated “Don’t panic, you’re not in trouble.” Breaking into the scene, I began a frantic avalanche of contrition. “I’m so sorry, I don’t know what triggered this —” But I was abruptly cut off by an officer who stated calmly, “Yes, we understand who he is and that he’s petrified.”

Somewhere during his sojourn along the lake, Zack, who was 20 years old at the time, had abruptly sat down too close to a woman seated on a bench, who gingerly told him to put on a COVID mask — and Zack bit her on the shoulder for what he perceived as a reprimand. The woman immediately summoned the police, not in anger but in compassion, realizing this young man was seriously disabled and apparently unattended.

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“He’s not in trouble, the woman’s not pressing charges,” the officer assured me. “We’ve been trying to get him to recount a phone number of someone we could contact —” He halted, spying a robust purple bruise on my calf and deep bite marks encrusted with dried blood along my arms. His tone turned solemn. “I can only imagine what you’ve been through. I do understand.”

I stood in stunned silence. I was not prepared for them to be prepared. It had been 45 minutes since they first gathered around Zack with no identifying information, 45 minutes during which his very safety hinged not only on the instincts of a benevolent stranger whom he assaulted but on a shared understanding by all involved of his clinical identity — that Zack is profoundly autistic.

What’s remarkable about Zack’s behavior is how unremarkable it is. Autism has been on an inexplicable rise with no signs of a plateau. The Centers for Disease Control and Prevention estimates that 1 in every 36 children born today has autism, and 1 in every 4 of those will have “profound autism,” a clinical distinction for those with much higher needs than the more verbally and intellectually able people who also have an autism diagnosis. Individuals like Zack with profound autism have minimal or no expressive language and require round-the-clock care to assist with daily living activities and safeguard them from extreme behaviors such as self-injury, the destruction of property, and “elopement” — the term for running or wandering away from caregivers or secure locations.

But while parents like me struggle to manage our children’s dangerous impulses, a powerful cultural movement has taken hold that forbids open discussion of profound autism and its manifestations. Advocates for “neurodiversity” are seeking to eliminate the term “profound autism” — on the grounds, they say, that it makes it seem as if autism is always an affliction. And now they are bullying doctors, researchers, lawmakers, and the rest of society into ignoring truths about Zack’s disorder that define his life.

Sanitizing Zack’s diagnosis and intense needs is dangerous. That day out on the lakefront trail, my son’s safety turned on the officers’ ability to decode from his conspicuous behaviors that he has profound autism in particular. They told me they realized that Zack’s refusal to identify himself to them despite repeated requests stemmed from an inability to articulate salient information in a moment of acute stress. They employed a measured response to his rage by speaking in succinct, assertive phrases, repeating reassurances, and maintaining a physical distance. If they hadn’t had such precise training , which depends on recognizing precise clinical criteria rather than employing general descriptors such as “neurodiverse,” the scenario could have gone very differently — with his arrest, forcible restraint, and even suffocation and death.

The intimidation campaign

I embrace many of neurodiversity’s fundamental tenets, especially the idea that people with intellectual disabilities should be broadly accepted and included in society.

I’ve staked my career on this principle — I used to work in the US Department of Justice as a disability rights attorney. I witnessed firsthand the exclusion of people with physical and cognitive disabilities from the rituals of daily life most other people take for granted. And I believe parents and professionals must aspire to discern a child’s authentic needs rather than superimpose our own preferences on them or force them into compliant molds of “normal.” Our children do not need to be “typical” to thrive in a society designed for its vast majority, nor is that an attainable goal.

But the concept of neurodiversity is going into dangerous territory if diagnostic distinctions across the spectrum are now considered archaic and bigoted.

In 2021, the medical journal The Lancet published a report from a commission of worldwide medical experts who recognized the need for “profound autism” as a discrete diagnostic category. The backlash was swift and mighty.

Autistic self-advocates launched a virulent campaign to quash the term, arguing that it had arisen, in the words of self-advocate Julia Bascom , “because some parents . . . see their kids as needing different kinds of support and different levels of restriction. But they are wrong on all counts.” The Global Autistic Task Force on Autism Research, an advocacy group, responded to The Lancet commission by saying : “For more than 30 years, autistic people have resisted functioning labels as misleading and offensive.”

As neurodiversity advocates denounce any framing of autism as a disability that requires medical intervention, they demand more support systems for people with autism, such as independent living “that honors authentic forms of human diversity.” Groups like the Autistic Self-Advocacy Network, people who identify on social media as #ActuallyAutistic, and parent activists insist that there is no such thing as a “normal” brain, only relative differences that render all humans “differently abled.”

To them, frank discussions about profound autism give a distorted image of people like Zack as unpredictable, cognitively limited, and presenting more behavioral challenges than the general population. Except the image is not distorted. While it’s painful to accept, these descriptors are accurate. Over the course of a single day, Zack, who is now 23, might furiously pummel his head in rage, slam his body into a wall, and bite me hard enough to draw blood.

The neurodiversity advocates — whose members are distinguished precisely by their ability to advocate for themselves, as Zack cannot — are not illuminating the complexity of autism; they are castigating into submission anyone who dares to deviate from their accepted language.

Intolerance for the term “profound autism” is leaching into medical journals and doctors’ practices. Doctors who’ve devoted their careers to treating children who compulsively ravage their flesh and slam their skulls into the ground are now verbally castrated on social media and “canceled” from lectures so regularly that preserving their livelihood requires stifling crucial medical data . It’s become common for autism self-advocates to “shout down” researchers imparting medical data at conferences or to call the researchers out on social media for online hazing and threats by neurodiverse mobs.

Today, both experienced and newer autism researchers contemplate leaving the field because, as one University of California scientist, David Amaral , observed, “People are getting reluctant to give public presentations or to be too vocal about what they’re finding,” despite the fact that “science is supposed to be about communication.” Top research institutions like the National Institutes of Health (NIH), tasked with conducting clinical trials to illuminate the disorder, face vitriolic accusations of being “ableist” and uncomprehending of the very people they are trying to help.

After the The Lancet’s commission recognized “profound autism” in 2021, the journal published an article by a doctor who wrote: “Generally, physicians think that disability is medical, and that if a patient’s condition interferes with their daily life, they are disabled. This traditional, medical model of disability does not address societal factors that influence disability, nor does it recognize disability as a cultural identity. Viewing disability as an issue stemming from an impaired body can encourage physicians to view disabled patients’ quality of life negatively . . . and to offer treatments aiming to fix the patient.”

This is absurd. I know of no person with profound autism who proudly identifies self-mutilating or violent impulses as core to their “cultural” identity. There is nothing bigoted about striving to ameliorate dangerous behaviors.

More critically, it is not the role of medical researchers to kowtow to trending cultural demands at the expense of addressing medically life-threatening conditions. Erasing diagnostic distinctions will make it impossible to perform research into the behaviors that are associated with profound autism — research that could lead to drugs that could benefit people across the entire autism spectrum. Although about 27 percent of all people with autism have profound autism, the condition is already underrepresented in clinical trials, which typically exclude those with an IQ lower than 70.

Two years ago, my son was abruptly ensnared in a cycle of self-injury, physical assaults, and chronic insomnia that within days catapulted him into a dangerously manic state — during which he risked seizures and seriously injuring anyone in proximity to him. Introducing anti-psychotic medicine delivered the jolt of serotonin to Zack’s brain that allowed him to reclaim his stability. Might other medicines become available that would work better? A movement that vilifies any medical mention of “risk,” “limitations,” or extreme behaviors has the power to thwart the development of such urgently needed drugs.

I hope Congress hears parents like me

The Autism CARES Act, which allocates NIH-funded research and services, sunsets on Sept. 30. Fierce debates are already underway about what Congress should do when it reauthorizes this funding. On one side stand autistic self-advocates who rally against any research not explicitly approved by them. On the other are parents who are desperate for clinical advancements but are so engulfed in the daily ordeal of managing their profoundly autistic children’s aggression and property destruction that they are largely incapable of organizing. The few dedicated parents calling for NIH to set aside funding to specifically address “profound autism” are vastly outnumbered by neurodiverse advocates who seek to block the act from passing if such “stigmatizing” language is included.

The loudest voices seek to abolish all spending on autism medical research and replace it with select services, such as workforce initiatives, that assist only those with milder autism. It’s here that the idea of neurodiversity poses the greatest threat — a movement that celebrates autism in all its forms, and depicts even the most severe afflictions as “merely a difference,” vehemently opposes any investigation into autism’s causes as ableist.

The truth is that we still don’t know what explains the steep rise in autism — perhaps it’s the product of widespread environmental contaminants altering our children’s brains — and this increase needs urgent attention. As these children age, state programs already strained by the deluge of adults needing lifelong services threaten to collapse entirely. Capitulating to self-advocates’ demands amid a global proliferation of one of the gravest disorders of our time is not only morally incoherent but medical malpractice.

In the natural course of events, every profoundly autistic child will eventually be orphaned by the most qualified and dedicated caretakers he’s ever known — his parents. Absent meticulous advance planning and abundant resources, that child will be automatically transitioned by the state to placement in a residential living arrangement. For that child to be placed appropriately depends entirely upon having accurate clinical information about the intensity of his needs, taking into account the possibility of physical aggression, self-injury, elopement, property destruction, seizures, and other overlapping medical needs. I’m confident that if a person facing homelessness and a precariously uncertain future were asked whether he values a safe residential arrangement over semantics that obscure his diagnosis, he would choose the former.

For the record, any language that contorts or constricts the full scope of Zack’s identity is something I find deeply offensive. Zack has struggled with innumerable obstacles and heartbreak in navigating a world that does not come naturally to him, and his competence is strengthening to this day. Blurring his identity under the indistinct banner of “neurodiverse” erases Zack’s lived history — all that he has endured and overcome to get here.

Whitney Ellenby is a former disability rights attorney in the US Department of Justice and the author of the 2018 book “Autism Uncensored: Pulling Back the Curtain.” She is also the founder of Autism Ambassadors, which runs recreational events for over 800 families affected by autism in the Washington, D.C., area.

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Star Trek and Disability

Call for Papers — Disability and Star Trek, Special Issue of CJDS

Proposal Deadline: September 1, 2024

Throughout its evolution, the Star Trek franchise has worked to tell stories about diversity on several levels, and a key element of several episodes has been disability. For example, from Captain Pike to Lieutenant Detmer, Star Trek offers many opportunities that provide for deeper discussions of disability. At the same time as Star Trek’s legacy has expanded, definitions and models of disability representation have continued to shift in new ways. Additionally, as disability theorist Dan Goodley (2017) suggests, theories have become multi-dimensional, and disabilities are now better understood to coexist alongside other markers of diversity (p. 44). Because both Star Trek and disability studies continue to shape how we think about the present as well as what we can imagine about the future, the Special Issue editors are seeking submissions for the Canadian Journal of Disability Studies (CJDS) that highlights the ways that disability influences, impacts, and operates within the Star Trek universe/franchise.

We are seeking submissions of previously unpublished articles on disabilities, with a focus on disability theory within the world(s) and storylines of the Star Trek franchise. We encourage articles from minoritized populations, including disabled authors. Please submit your abstracts of no more than 300 words to Special Issue Editors Daniel Preston ( [email protected] ) and Craig A. Meyer ( [email protected] ) by September 1, 2024, with the subject line, “CJDS Star Trek Special Issue.” In the abstract, please include name, affiliation (if applicable), and contact information.

Possible topics include (but are not limited to):

● Disabled identity formation

● Technology and identity

● Disability as it relates to specific episodes or storylines

● Disability as an intersection - how do race, gender, sexual orientation, etc. interact with

experiences of disability?

● Quality of life and disability

● Madness, mental health, or neurodiversity

● Disability and Community

● Access and accommodation in Trek

● The meaning of disability in the franchise / alternate universes or timelines.

● Loss / gain related to disability in Trek.

For those accepted for consideration, the deadline for full paper submission will be March 1, 2025 for preliminary review. Final submissions should follow CJDS guidelines available at the following links: About CJDS for Scope and Style Guidelines and the Submission Checklist.

Proposed Timeline:

● Abstract (~300 words) -- September 1, 2024

● Author Notifications -- October 1, 2024

● Full Drafts Due (no more than 6,000 words excluding references, tables, etc.) -- March 1,

For CJDS format and guideline questions, please contact Jay Dolmage (Editor) at [email protected] .

Special Issue Editors:

Daniel Preston, PhD is an Education Specialist in the Writing and Research Center at Hudson Valley Community College (SUNY). He has taught literature and writing courses at colleges and universities throughout New York State, and his primary research interest combines disability studies, popular culture, and writing.

Craig A. Meyer, PhD, is an Associate Professor of English and Director of the Writing Program at Jackson State University. His research focuses on rhetoric, first-year writing, academic and creative writing, artificial intelligence, disability studies, popular culture, and social justice.

As a team, Preston and Meyer have published several book chapters that highlight the presence of disability within Star Trek and continue to find new ways to engage themselves with this complex and unique franchise.

● Goodley, D. (2017). Disability Studies: An Interdisciplinary Introduction. (2nd ed). Sage.

College of Agriculture & Natural Resources Alumni & Friends

Exploring the influential legacy of dr. zhu zuxiang.

Alex Dardas <[email protected]> - June 03, 2024

Widely considered the founder of the soil chemistry discipline in China, Department of Plant, Soil and Microbial Sciences alumnus Dr. Zhu Zuxiang (Chu, Tsu-Siang), Ph.D. (’46, ’48), exemplifies the reach of CANR’s global impact.

Since the first international student was welcomed to campus in 1873, MSU has been a destination for tens of thousands of students and scholars from around the world. For over 150 years, these students have brought with them a wealth of knowledge, experiences, and cultures that have enriched the entire MSU community.

The Office of China Programs has launched a series highlighting stories about Spartan students, faculty and alumni from China, including a recent profile about Dr. Zhu Zuxiang, Ph.D. (’46, ’48), a distinguished alumnus of the Department of Plant, Soil and Microbial Sciences (PSM).

After completing his education at MSU, Zuxiang went on to become a prominent academic leader in China. He is credited as being the founder of the field of soil science in China and served as president of Zhejiang Agricultural University from 1980-1983.

“PSM is proud of our longstanding impact to the global soil science community. We are proud of all our alumni and particularly, Dr. Zhu Zuxiang, for his influential work in China,” says Dr. Brian Horgan, the Chairperson of the Department of Plant, Soil and Microbial Sciences.

Zuxiang’s Journey at MSU

Zuxiang was born in Cixi, China, a city located in the north of the Zhejiang Province. In middle school, his teachers inspired an early interest in science and technology. He graduated from the College of Agriculture in Zhejiang University in 1938. At a time of great turmoil during World War II, Zhejiang University was forced to move west and Zuxiang played a critical role in transferring all of the College of Agriculture’s materials, instruments, and equipment to its new location. This massive undertaking earned him special recognition for his courage and commitment.

 In the final year of World War II (1945), he decided to pursue his graduate studies at MSU, then known as Michigan State College of Agriculture and Applied Science. He earned a master's degree (1946) and Ph.D. in soil science (1948), with a minor in plant physiology and surface chemistry.

At MSU, Zuxiang distinguished himself among the faculty and his fellow students for his work ethic and academic achievements. He regularly gave up summer and winter holidays to spend more time in the agricultural chemistry lab or take additional courses. It took only three years for Zuxiang to complete his dissertation and he exceeded the doctoral degree requirement by 30 course credits. During his graduate studies he served as the president of the MSU Chinese Student Association. His leadership connected many fellow students from China to social activities on campus and helped to foster a special relationship between the growing group of Chinese students and the wider MSU community.

In 1947, the president of Zhejiang University visited MSU for a lecture and met with Zuxiang personally. He urged him to return and teach at his alma mater after finishing his doctoral. Despite receiving more lucrative offers from other Chinese universities, Zuxiang chose to return to Zhejiang University and was appointed a full professor in the College of Agriculture at just 33 years old.

A trailblazing soil scientist

Zuxiang became known as the founder of soil chemistry in China for his pioneering research innovations. Throughout his career, he focused on the availability of exchangeable cations and their influencing factors in soil. His scientific contributions garnered international acclaim, particularly for introducing two new concepts: the saturation effect and co-ion effect. These insights advanced a greater understanding of the dynamic changes in soil available nutrients and their influencing factors. His was regularly cited by U.S. soil science textbooks and international scientific papers, significantly advancing the teaching and research of soil science.

A prolific scholar, Zuxiang wrote nearly 90 scientific papers, books, and translations, including some of the earliest soil science textbooks in China. Many of the theories and technologies developed by Zuxiang played a vital role in improving agricultural science, technology, and agricultural productivity in China.

“Dr. Zhu Zuxiang’s achievement is inspirational for young scientists. He is a role model for his students and even a wider community across China,” says Dr. Zhu Yong-guan, a prominent soil scientist from Chinese Academy of Sciences, who is an academician of the Academic Divisions of the Chinese Academy of Sciences and the recipient of the 2022 International Union of Soil Sciences Von Liebig Award.

Zuxiang consistently engaged in outreach activities, including leading the national soil survey and soil diagnostic research cooperation group and carrying out a large number of rapid chemical tests on soil and crop nutrients. During his tenure as vice president of Zhejiang Agricultural University, he was responsible for establishing the first environmental protection department in an agricultural college in China.

His work earned him numerous awards and academic honors throughout his career. In 1980, he was elected as an academician of the Academic Divisions of the Chinese Academy of Sciences (like a member of the US National Academy of Science). He served as a member of the general editorial board of Agricultural Encyclopedia of China, the chair of the editorial board for the Soil Volume of Agricultural Encyclopedia of China and editorial board of International Tropical Agriculture. He also received scientific and technological recognitions from the Zhejiang Provincial Government, the Provincial Science Conference, the Provincial Education Committee, and the National Education Committee.

“Seek truth, seek kindness”

Zuxiang played an active role in public service. In 1980, under the direction from the China’s Ministry of Agriculture, Zuxiang served as the vice chair of the preparation committee for establishment of the China National Rice Research Institute. In 1981, the project received support from the National Sixth Five-Year Plan and a special long-term interest-free loan from the World Bank. In 1983, Zuxiang was appointed as the first director of the China National Rice Research Institute by the Ministry of Agriculture.

He held positions as Vice President of both the Soil and Fertilizer Research Society of the China Association of Agricultural Science Societies and the Soil Science Society of China. Additionally, he served as a representative to the eighth National People's Congress and as a member of the fifth and sixth Chinese People's Political Consultative Conference National Committee.

A lifelong advocate for educational empowerment, Zuxiang always sought out opportunities to inspire the next generation of leaders. In remarks to students at his middle school alma mater, Zuxiang gave the following advice, “Seek truth, seek kindness, seek beauty, be a teacher, and strive for better! Be moral, be intelligent, be physical, teaching requires nurturing."

Zuxiang passed away in 1996 but the legacy of his many achievements continues to inspire others. The academic collection of Zhu Zuxiang was released at a commemoration conference for his 100 th birthday in 2016.

Learn more about the Office of China Programs and the Department of Plant, Soil and Microbial Sciences .

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June 3, 2024

RFK Jr.’s Vice-Presidential Pick Drawn in by Debunked Autism Conspiracy Theory

Conspiracy thinking about autism drives anti-vaxxer presidential candidate RFK Jr.’s pick for vice president

By Steve Silberman

Robert F. Kennedy Jr. has tapped philanthropist and technology entrepreneur Nicole Shanahan as his running mate.

David Paul Morris/Bloomberg via Getty Images

With Robert F. Kennedy Jr. polling more strongly in battleground states than any third-party candidate for president in decades, a more personal drama now plays out in Silicon Valley among the friends of his running mate, attorney Nicole Shanahan. They're wondering what happened to the socially conscious entrepreneur they knew as a reliable advocate for causes such as restorative justice, female empowerment and the tackling of climate change. They worry that the young attorney joining Kennedy’s run for the White House may help erode Joe Biden’s slim margins of support against Donald Trump in one of the most fraught elections in American history.

Introducing Shanahan as his running mate in March, Kennedy dismissed these concerns, praising her as a candidate who will rally support for a “revolution” against what he calls “ the Trump/Biden Uniparty ,” which he blames for saddling the nation with “ruinous debt, chronic disease, endless wars, lockdowns, mandates, agency capture, and censorship.” To many voters in 2024, with congressional Republicans calling for a “ national divorce ” between red and blue states, this alleged uniparty has never looked less united . But rather than allaying the anxieties of Democrats desperate to avert four more years of MAGA rule, Kennedy seems eager to play the role of a spoiler , as he accurately predicted that Ralph Nader would do in 2000. He has declared that “ Biden can’t win , ” insisting that the incumbent Democrat is the real spoiler who should drop out of the race.

It’s easy to see why the controversial heir to the most prestigious liberal name-brand in American politics chose Shanahan, a relative unknown, to be his nominee for vice president. As an ambitious and athletic millennial who surfs and grows her own food with her boyfriend, a cryptocurrency software developer she met at Burning Man , the 38-year-old attorney brings a woman’s presence, and youthful energy, to a race dominated by octogenarian men, not to mention the 70-year-old Kennedy.

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And as the former wife of Google co-founder Sergey Brin, the seventh richest man in the world , Shanahan brings another factor crucial to the campaign: unfathomably deep pockets. Her backing enables Kennedy to skirt questions about why the notoriously anti-immigration GOP megadonor Timothy Mellon is financing the super PAC supporting Kennedy’s campaign, American Values. Mellon has poured millions into Trump’s Make America Great Again Inc., while donating $53 million in stock to the state of Texas to build the former president’s border wall.

Shanahan is a newcomer to electoral politics and, until recently, had created only a sparse social-media footprint, making it tough to pin down the evolution of her perspective. But her origin story is now widely known. While putting herself through law school, she launched her own patent-valuation startup, ClearAccessIP. After her first marriage failed, Shanahan met Brin at a yoga retreat and fell in love, catapulting her into the most rarified circles of Silicon Valley entrepreneurship. In 2018 the power couple had a daughter named Echo. When Shanahan launched a foundation with Brin’s backing, she named it Bia-Echo, after their daughter and the Greek god of indominable power . The foundation’s website explains that its core areas of investment are “reproductive longevity and equality, criminal justice reform, and a healthy and livable planet,” goals that many social-justice advocates might support.

So how did Shanahan end up on a “spoiler” ticket praised by right-wing ideologues like Alex Jones, Steve Bannon, Michael Flynn and Roger Stone, the notorious GOP mischief-maker who called an alliance between Kennedy and Trump his “dream ticket” ?

The turning point in her life came in 2020, she says in an Instagram video , when Echo was diagnosed with autism.

The Daily Beast claims that Shanahan “ chafed at Brin’s left-brain thinking ” about the best practices for raising a child on the spectrum, and the Google co-founder filed divorce papers shortly thereafter, citing “irreconcilable differences.” She initially contested their prenuptial agreement and sought $1 billion of Brin’s fortune but eventually settled out of court. She also responded to Echo’s diagnosis by becoming a “ warrior mom ” with a virtually unlimited war chest, waging a pitched battle against her daughter’s condition based on her own research, which she estimates takes up to 60 percent of her time.

Shanahan routinely touts her commitment to following the science, particularly when she’s trying to lend legitimacy to a controversial opinion. (She recently defended her support for banning abortion early in pregnancy by saying “ the science around [viability] is changing all the time .”) But while she claims that world-class experts keep her apprised of cutting-edge autism research, her ideas about her daughter’s condition seem stuck in the 1990s; during that era, actress Jenny McCarthy was hailed as an autism expert, and Andrew Wakefield triggered a global panic about vaccines with the publication of a paper in The Lancet linking autism to vaccines. That paper was later retracted after multiple investigations found it based on fraudulent data and riddled with conflicts of interest.

Much progress has been made since then, both in the scientific understanding of autism and the advancement of civil rights for people on the spectrum. But you wouldn’t know it from watching Shanahan’s Instagram reel about her daughter , which overlooks hundreds of peer-reviewed studies of the central role of genetics in the condition in favor of earnest hand-waving about cell phones, preservatives in food and an alleged conspiracy by big pharma to cover up a vaguely defined epidemic of “chronic disease.”

And you wouldn’t know it from listening to Kennedy, who routinely caricatures people on the spectrum as “vaccine-injured” zombies. “They get the shot ... and three months later, their brain is gone,” Kennedy told an audience in 2015 . Insisting that previous generations of autistic people simply never existed—when in truth, they were often hidden away in institutions because of a thoroughly discredited theory that autism is caused by bad parenting—the candidate told radio and TV host Michael Smerconish last year : “I have never in my life seen a man my age with full-blown autism, not once. Where are these men? One out of every 22 men who are walking around the mall with helmets on, who are non-toilet-trained, nonverbal, stimming, toe-walking, hand-flapping. I’ve never seen it.”

For Kennedy and the communications director of the campaign, Del Bigtree, who also produced the 2016 film Vaxxed, directed by none other than Andrew Wakefield, the COVID-19 pandemic provided new targets for misdirected rage. On January 6, as rioters converged on the U.S. Capitol to try to stop the counting of Electoral College votes that eventually confirmed President-elect Biden’s victory, Bigtree, speaking a block away, brought the themes of vaccine refusal and Republican refusal to accept the outcome of a national election to a conspiratorial crescendo: “I wish I could tell you that Tony Fauci cares about your safety,” he told the crowd. “ I wish I could believe that voting machines worked … but none of this is happening .”

If Shanahan’s friends are wondering why a self-proclaimed supporter of women’s autonomy is lending her name and fortune to the spoiler campaign of a man who writes off people like her own daughter as damaged goods, a nearly overlooked aspect of her recent past shows just how far she’s willing to go to “fix” Echo to the point where she loses her diagnosis. Much salacious press attention has been expended on an affair that the young entrepreneur allegedly had with Elon Musk at an art fair in Miami in 2021, as reported in the Wall Street Journal (denied by both Musk and Shanahan). But not enough attention has been paid to what she asked Musk to do: use his experimental Neuralink technology to “treat” her daughter’s autism .

Never one to shrink from making extravagant claims, Musk has promised that the technology (which employs a surgical robot described as “a cross between a microscope and a sewing machine” to weave hair-thin electrodes directly into brain tissue) will someday help treat obesity, depression and schizophrenia , as well as autism, despite the fact that the mechanisms in the brain that cause these conditions have proven frustratingly elusive even after decades of research. For a warrior mother with an inexhaustible war chest, early access to Musk’s technology must have seemed like a precious opportunity.

But Shanahan and her daughter should be grateful that Musk’s intervention never happened. The Food and Drug Administration gave its approval for Neuralink’s first human trial in 2023, but the rollout of the technology has been problematic. First, reports surfaced that about a dozen of Neuralink’s primate subjects had to be euthanized after test animals suffered complications that included fungal and bacterial infections, brain bleeding, uncontrollable shaking, head-banging and other signs of extreme distress . Then, in May, the company admitted its first human trial had hit a snag: some of the wires implanted in the brain of a young man who developed quadriplegia after a 2016 diving accident had unexpectedly “retracted,” possibly because Musk’s robot surgeon left air trapped in his skull. Neuralink has reportedly known about problems with the wiring for five years .

Musk’s grandiose claims hearken back to an earlier era of horror for people on the spectrum, when desperate parents sought cures for their children in experimental treatments like lobotomies and brutal electric-shock devices to “extinguish” their autistic behavior.

A portrait of the Kennedy family as they sit in the shade of some trees, Hyannis, Massachussetts, 1930s. Seated from left are: Patricia Kennedy (1926 - 2006), Robert Kennedy (1925 - 1968), Rose Kennedy (1890 - 1995), John F Kennedy (1917 - 1963), Joseph P Kennedy Sr (1888 - 1969) with Edward Kennedy on his lap; standing from left are: Joseph P Kennedy Jr (1915 - 1944), Kathleen Kennedy (1920 - 1948), Rosemary Kennedy (1918 - 2005), Eunice Kennedy (rear, in polka dots), and Jean Kennedy.

Bachrach/Getty Images

There’s a cautionary tale buried in the Kennedy family legacy that should serve as a stark warning to Shanahan as she amplifies her running mate’s message that people like her daughter are damaged goods. When RFK Jr.’s aunt, Rose Marie Kennedy, was born in 1918, a misguided nurse held her head in the birth canal for two hours while waiting for the obstetrician to arrive. As a result, the little girl, nicknamed Rosemary, struggled with learning disabilities and seizures for the rest of her life. By the time she was in her 20s, her father Joseph, a prominent businessman who was desperate to keep his daughter’s condition secret, arranged for her to have a lobotomy. The brain operation proved devastating to Rosemary, leaving her incontinent and unable to walk or speak coherently.

This tragedy proved to be the impetus for Rosemary's sister, Eunice Kennedy Shriver, to found the Special Olympics in 1968 and become a pioneering advocate for the rights of disabled people. As the 35th president of the United States, Rosemary's older brother John signed the Maternal and Child Health and Mental Retardation Planning Amendment to the Social Security Act, a precursor to the landmark Americans with Disabilities Act. Championed by a bipartisan group of politicians including Senator Bob Dole and Rosemary's brother, Senator Ted Kennedy, the ADA was signed into law in 1990.

Although he owes his electoral prospects entirely to his family name, RFK Jr. seems disinterested in his family’s legacy of fighting for disability rights, dismissing the struggle of autistic people for dignity and respect in his book The Real Anthony Fauci as “a particular brand of autism epidemic denial known as ‘ Neurodiversity. ’” But if Shanahan’s belief in female empowerment extends to her own daughter, she has much to learn from the other Kennedys, who have publicly disowned her running mate’s spoiler campaign. And hopefully, as Echo comes of age and finds her own people, Shanahan will find she has much to learn from her, too.

This is an opinion and analysis article, and the views expressed by the author or authors are not necessarily those of Scientific American.