Self-Determination
We have discussed how in the past it was common for individuals with disabilities to be placed in institutions, and how even when people with disabilities gained more rights through legislation such as Section 504 and ADA many of the major decisions that impact their lives were made by others around them. Today, we recognize that people with disabilities have a right to make their own decisions about their lives in order to live lives that are fulfilling to them, and not just convenient to others!
Watch these videos describing what being self-determined means to these individuals with developmental disabilities:
http://www.youtube.com/watch?v=jBTmiXh-Dtw
http://www.youtube.com/watch?v=jBTmiXh-Dtw
Several research studies have been conducted to determine whether or not self-determination affected the outcomes of adult life for people with cognitive disabilities. One such study compared two groups: those with high self-determination and those with low self-determination. These groups were assessed one year after high school and then again three years after high school in order to compare their outcomes in areas such as independent living, maintaining a bank account, receiving job training, holding a job currently, working full-time, and working part-time. After being out of high school for three years, the outcomes were significantly higher in every single category for the high self-determination group (Wehmeyer & Palmer, 2003). Quite obviously, learning self-determination skills paid off in the long run for those individuals.
The exciting part is that self-determination can be taught, even starting from a very young age. Families of people with developmental disabilities and their teachers at school can help by giving them choices, and allowing them to direct their own lives to the greatest extent possible, for example allowing them to choose what work to complete first or what classes to take when they are older (with guidance, of course). This is especially important when it comes to making decisions that are impacted by the individual's disability in any way. In disability culture there is a saying to capture this; “Nothing about us without us.” For example, while parents providing information to classmates about the nature of their child's disability can help them to better understand their child, the student needs to be asked if they are okay with the parent sharing that information. Individuals with disabilities often know what they can do, and furthermore even those with the most significant disabilities can usually tell us what they are OK with doing.
In addition to making choices, people with disabilities must be able to self-advocate. This is again something that can be taught. Being able to self-advocate means that individuals with disabilities are able to stand up for their rights as humans and citizens of our nation. It also means that when they encounter people who want to make decisions for them, they are able to make their thoughts heard.
One self-advocate in the public eye is Dr. Temple Grandin. Dr. Grandin has autism, and at the time she was diagnosed, not much was known about providing interventions and supports for children with this disability and their families. Even when the doctors did not provide much hope for her future, Temple’s mother, Eustacia Cutler, is known to have encouraged her to be independent and to make as many of her own choices as possible as she grew. She also provided consistent, a routine, and an education in manners for Temple, just as she did for her other children. Today Dr. Temple Grandin is a professor of animal science at Colorado State University, who has brought great change in her field. She has designed more humane systems for ranching cattle, and is listed among the 2010 Time 100 most influential people in the world. She also writes and speaks about her experiences with autism. Most importantly, Dr. Grandin says that her work fulfills her.
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*Activity*
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Read this interview with a college student who is a self-advocate with an Autism Spectrum Disorder:
http://thinkingautismguide.blogspot.com/2012/04/lydia-brown-and-autism-acceptance-month.html
There are probably some things in this interview that you can relate to. Maybe you like hot chocolate, or like to eat lunch with your friends. You most likely like to feel accepted and to have friends that you can trust. This is the heart of the self-determination and self-advocacy movement. People with disabilities, are PEOPLE first and they deserve the right to be treated as independent human beings who are capable of making their own choices. Lydia says that she feels sad when people make assumptions about her abilities or challenges and do not treat her as an equal. She also says that it is even harder to watch others be put down in this way. As a peer buddy, you will likely encounter situations where people will make assumptions about your buddy, or treat him or her in a way that is not respectful of their personhood. Write a 1-2 page reflection on the ways that you can help your buddy to advocate for him or herself. Use the links below to help you!
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You can learn more about self-determination and self-advocacy by following the links below:
http://www.thearc.org/page.aspx?pid=2358
http://www.thearc.org/page.aspx?pid=2662
http://www.mnddc.org/parallels/seven/7menu.html
http://www.aamr.org/content_193.cfm
http://autisticadvocacy.org/
http://autismnow.org/
http://www.sabeusa.org/?catid=167
Source: Wehmeyer, M., Palmer, S., (2003). Adult outcomes for students with cognitive disabilities three-years after high school: The impact of self-determination. Education and Training in Developmental Disabilities, 38(2), 131-144.
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