April 13, 2013
Living Disabled in Boise: An Ethnography on the Disability Community in the Boise Area
A man named Alphonse Carr once said “Some people are always grumbling because roses have thorns; I am thankful that thorns have roses” (“Disability Quotes Collection”). I am the oldest of four children of a single mother. All of my siblings are developmentally delayed. Seeing as how my first sibling was born when I was a year and a half old, I have been part of the disability community here in Boise for nearly my whole life. I have found that there is beauty in the mess that comes with being disabled. I am intrigued now, as an adult training people to work with the developmentally delayed, as to how this culture has helped or hurt the individuals who comprise it. And so, I set out to study it.
I work for Access Behavioral Health services. We provide developmental therapy to people of all ages who are not meeting developmental milestones. Those milestones include anything from potty training to budgeting. I have seen this be very beneficial to some clients, and completely hopeless for others. As far as ability and behaviors go, I think it would surprise many people to know how extremely often I’ve observed that it is much more nurture related than nature. Environment and consistency play a huge part in how well a client is going to do in therapy. Our techs can do their best to one-on-one help them to reach their goals, but quite often this is undone by the family because they do not perform the necessary maintenance. If I came from a different background, perhaps I would find this more neglectful. But I know exactly how exhausting it is to struggle day in, and day out to care for family members who suffer from delays and disabilities. In many cases, it is much easier to do something for someone than it is to slow down and hold someone’s hand to get it done.
That is why there are supports available in Boise such as respite care which is when someone comes in to give the parents of a disabled individual a break and stays with them. As I mentioned before, I train staff to do developmental therapy which is available to families up to twenty two hours a week. For children with violent and mal adaptive behaviors, we also provide habilitative intervention with specially trained staff. And, to keep everyone on the same page, family training is available to the parents of developmentally delayed children.
Ours is one of only two agencies in the Treasure Valley which provide these services on a one-on-one basis for both children and adults, which means we are a very connected group of people. Culture is defined by my Sociology text book as consisting of “…the language, values, beliefs, rules, behaviors, and physical artifacts of a society” (Newman 31), which is why I consider the developmental disability community a culture in its own right. We have our own language which is why when I talk to a parent about “Hippo Therapy”, they know that I am discussing a program here in Idaho which teaches disabled individuals how to care for and ride horses, not hippos. We have our own values. The standards to which we hold each other are much different from that of the mainstream population. We have our own beliefs, that though these individuals may not be astronauts or politicians, they have value and we encourage them to contribute to the world in the way they can, even if that is only a smile or a wave. I think it goes without saying that our culture has its own behaviors and standards for behavior. A twenty something man with the mental capacity of a five year old is certainly not held to the standards of his peers. The families and workers in this society also have specific behaviors of caretaking and respect which are expected of them. As far as our own artifacts, one of our greatest tools is assistive technology. We adapt everyday items to be usable by the people we care for.