Looking Differently at Disability and Decision Making

Having legal capacity means having the right to make decisions that affect your own life. It’s a fundamental right that people with disabilities are routinely denied. 

Around the world, people with disabilities—particularly those with intellectual or psychosocial disabilities—are invisible in the eyes of the law, which often doesn’t fully recognize them as people. They are left legally disempowered—unable to open a bank account, get married, vote in elections, consent to or refuse medical treatment, and in some cases even receive items in the mail.

Whether motivated by benevolence or prejudice, the cumulative result of this disenfranchisement is the same: people with disabilities are rendered non-persons before the law, barred from making decisions about their own lives.

Open Society Fellow Michael Bach of the Institute for Research and Development on Inclusion and Society talks about how “supported decision making” can allow those of us with disabilities to contribute to and participate more fully in society.

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We all have gifts, passions, talents. Look beyond the first glance.

I know a case of a girl with physical disability living in a deep rural area denied her legal right of inheritance. People think that PWD's has no capacity to manage property and even they don't understand that they have right to own property. There are many miles to move specially need to work aggressively on awareness creation activities. One time when we promote inclusive sport and train the community to send their kids with disability to participate on sport program, almost all parents were panicked and laughed with our endeavor. Any way we have to fight this public prejudice.

We emphasize the disenfranchisement of people with intellectual or psychosocial disabilities, but you are absolutely right in pointing out how the rights of people with physical disabilities -- in this case, to inherit -- can be violated as well by law and practice that do not respect people's "legal personhood." And in fact, we must challenge the disrespect of legal personhood across the board. Women in some places may still be limited in their right to inherit and to be full agents in their lives.

For years now our 17 y/o has been denied a free appropriate education. We had a law suit won our case with a 36 page review officer saying the district had to send her to a private school that would be able to meed her needs. The district appealed this and our state of NY is back logged 186 cases so this creates a grid lock and the children will age out and parents will have wasted all this money to get no where who loses out the people with the disability. I have not figured out how to expose or get the people in our very rich district to be accountable.Not only the district, the elected officials and even education department all their hands are "tied" to not do anything? The laws are not upheld for the individuals with disabilities.The schools have large insurance funds to protect themselves even when proven to be failing the students.If you know of a way I would be interested in trying it. Many thanks for your voice.

I am working on creating some curriculum for the newly graduated adult... since the schools are not really interested in teaching students anything but short term answer drills to help the schools get good report cards... my site is www.yoglin.com ; so please leave me a contact msg and let me know what you would like me to work on developing.

It is a kind of institutionalized discrimination that people together have to fight against as far as we all don't have same intellectual capacities.

Amazing to say the list

There are two sides to this story. People with disabilities are more protected by the law than anyone in society. Care workers are paid pitiful wages to take care of them and its below poverty level wages. People who are protected by the law who receive services often physically and sexually abuse the very workers that try to help them. Abuse towards care workers is 40 percent higher than it was 20 years ago. Victims who are care givers are told by their employers that If they report this abuse they will lose their jobs. How do I know this? I have worked in care for 17 years. Each year it gets worse and more staff are abused.

I find the general tenor of comment above wildly at odds with the facts. While care and support workers are indeed often underpaid, it is people with disabilities who are at significantly greater risk than the general population of being victims of crime:

"The clearest message from the analysis in this report remains the fact that disabled people in all age groups are more likely than non-disabled people to be the victims of crime. This is true in England and Wales and in Scotland, and the pattern has remained unchanged over the analysis period, although crime rates have fallen slightly overall. " (Abuse of Vulnerable Adults in England 2012-13, http://www.equalityhumanrights.com/sites/default/files/publication_pdf/r...).

This is equally true in other countries, e.g. the United States:

"In 2010, the age-adjusted, serious violent crime (e.g. rape, robbery, assault) victimization rate for persons with disabilities was 16 per 1000 persons. This is triple the rate of 5 per 1,000 persons for those without disabilities. Data was based on non-institutionalized U.S. persons age 12 or older. (Bureau of Justice Statistics, 2011, http://www.centeronelderabuse.org/docs/ResearchBrief_Disabilities_508web...)."

While it is sadly true that workers in care, support and health are sometimes assaulted in the course of their duties, and while low-paid and undertrained workers may be at particular risk through not having the skills and knowledge needed to de-escalate potentially violent situations, the fact remains that a disabled person is far more vulnerable than a worker to all forms of assault, abuse and crime. Moreover, in practical effect, their legal protections are often as thin as the paper they are written on. The most comprehensive legislation can provide no protection or redress if it is not enforced, and many disabled people do not have the tools or access to request or ensure enforcement.

All homage to Tina Minkowitz who has been talking this talk for the decade and a half I have known her.

This is about self-determination.

Yes, that is a powerful and effective way of framing it -- self-determination. And indeed Tina's role in achieving this article in the CRPD and the many offshoots since cannot be overstated.

after wonderful careers and living well, due to illness now low-income senior, i depend on social security, medicaid & a very small allotment of food stamps. was in SCSEP, but only allowed 4 years. if i work in any other job or program, i lose all my benefits..but not enuf money to get adequate housing, health benefits, foods, clothing, etc. meanwhile, unable to enjoy so much of what i did before because so financially restricted. my life so diminished..primarily because of govt restrictions.

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