We hear much about Self-Advocacy and there are many trainings out there for people to learn to become self-advocates. This is part of becoming more independent and able to make choices. Yet, these trained self-advocates are only a minor part of the population of people with intellectual and developmental disabilities.
The agenda of many of these self-advocacy organizations may actually be against services and choices that many of their peers would advocate for. The problem is that the peers who are not involved in these self-advocacy trainings (for a variety of reasons) are not able to communicate thier needs and choices in a typical manner. Therefore, the majority of people with intellectual and developmental disabilities are not represented by these self-advocacy groups.
When trained self-advocates voice their agendas and state that this is what people with IDD advocate for, they mislead our legislators and policy makers.
Again, it is important to understand the disability of intellectual AND developmental disabilities – by the very nature of the disability the people affected by it are, in most cases, unable to communicate their needs and choices to those who do not know them. The people with IDD may not even be aware of or care about the issues that the trained-self advocates choose to concentrate on.
Yesterday I decided to take my son to a SAIL (Self Advocates in Leadership) meeting in Seattle. My son is aware that I go to our state capital and communicate with people in our government. He is aware of some of the names that he hears me say and gets excited when I say I am going to meet with one the legislators he has heard of.
I told him that we were going to a meeting for people with disabilities. I have no idea if he understood what I was even talking about because he doesn’t really consider himself “disabled” or needing any type of special adaptation or accomodation. He knows that he’s not able to do some things that his siblings do – such as drive – but he’s totally fine with that and if you asked him if he wanted to learn to drive he would crack up laughing. My son accepts how he is and is happy. He has been disabled his whole life and his reality is that he does things differently than his typical siblings. He is aware that his siblings do things that he doesn’t do – but that’s totally okay with him becuase he is able to do the things that are important to him. In that respect, they are all the same. He is extremely happy with his life!
So the topics and discussions at the SAIL meeting were of absolutely no interest to him. Due to the length of the meeting and total lack of interest on my son’s part, we did leave the meeting early since it was also clear that his noise level and interest in other things besides what was being discussed were extremely distracting to at least one of the speakers.
One speaker, who happens to be on the Seattle Commission for People with Disabilities, appeared very disturbed by my son. The speaker had to stop and complain several times to one of the meeting co-chairs about the distractions and even said that he could not talk with such distractions. After about the 4th time this speaker started to talk it was very clear that he was getting agitated by my son’s noise but the co-chair told him to just keep talking and not to worry about the “distraction” (my son’s noise)
When my son kept trying to look at his You-tube videos or listen to Pandora or ask Siri about various people he knows, he would either get very excited and laugh or get angry with me for trying to encourage him to be quite. He then started focusing on the time and saying “we will leave at 3 o’clock” for about 45 minutes and then we did leave at 3 PM.
It’s too bad because I think SAIL did discuss a topic that my son does have an opinion about – that of the intermediate care facility. He is adament about these communities staying open and providing homes and care to those who need to live there. This is something that he does understand from his experience – an experience that most in that room did not have – or at least not in recent years.
My son shows great concern about Fircrest (the ICF/ID in our neighborhood and where he lived for 6 years) closing. He can name the other Residential Habiliation Centers in our state that are often in the news with regards to funding cuts and closure. He did live at Frances Haddon Morgan Center (FHMC)for 1 year but was able to move to the RHC in our neighborhood prior to the closure of FHMC. My son often asks “What happened to Frances Haddon?”
It is clear to me that this self-advocate meeting was meaningless to my son yet he is one of the many who need advocacy. It’s shameful that the agency that is geared towards self-advocacy is unable to accommodate the needs and opinions of those who most need an advocate and fail to see the broad spectrum of needs and choices of the population.
I’m really curious how these self-advocacy groups work with people similar to my son and how they reach out and learn what issues are important to them? Or is this population forgotten and silent when it comes to advocacy?