‘I am not Developmentally Disabled’
I sometimes think that I should have that phrase tattooed on my forehead to save time when I’m talking to a new expert or staff in my team.
Now let me be clear there is nothing wrong with having a Developmental Disability, but I have Cerebral Palsy. THAT’s my disability and my only disability. Imagine how frustrating it would be to have Developmental Disability and were offered only treatments and therapies for Cerebral Palsy: you can sort of see where I’m coming from. To understand why I’ve come to ponder that question you have to understand the history of disability funding in BC and how I fit into that history.
When I left Pearson and first entered the community there was just a single ministry that handled funding for people with disabilities. It was also just the tail end of the de-institutional movement so everything was geared towards group home placement. Then the Ministry Social Services was dissolved and care for people of disabilities was split between the Ministries of Children and Families and the Ministry of Health with Children and Families gaining was responsibly people who are now described as Developmentally Disabled (though a different term was used back then). My funding, along with a few other people, who were ‘de-institutionalized’ from Pearson were grandfathered into the Ministry of Children and Families. Hence even though I didn’t have a Developmentally Disability I was placed into that funding stream.
How did this affect me and my support?
- My life suddenly became other people’s programs. Something that need to be created, goals set, and most annoying to me, written down. In most cases I had a say, on what was included in the program but not the final word. That privilege was reserved was the program manager who are individual studies in power dynamics. The good managers surrendered power to me and allowed me to determine what my life looked like. The poor managers (which I had a lot of early on in community) decided what was ‘best’ for me and followed through on that idea. These program decisions often reflected a more what was currently in vogue either with the then trendy community living ideology or within popular culture in general. So, my health was nearly ruined because ‘someone else’ decided that I was supposed to feed myself, because that made me more independent. Or that being vegetarian was a healthier choice even though few of my staff could cook a health vegetarian meal, and I loved meat. At least I dodged the whole osteoporosis fad in the 90s where female clients were being prescribed Tums as a source of calcium because their staff were scared about it for themselves.
- The other way being considered developmentally disabled affected my life, was the assumption that I was less capable to understand and make decisions in my life. There has always been a little talked about bias within a large part of the population that any physical disability must mean that the person is also developmentally disabled as well, but this was something different because it was my staff that believed I was less capable not the general public. Now to be fair it wasn’t entirely their fault. My service providers largely supported people with developmental disabilities so when someone came to work with me it was their ‘assumption’ that I had one as well, along with my Cerebral Palsy.
So how did this assumption affect me? Up until very recently quite a few of my staff my staff and many experts still today believe that people with disabilities, especially, developmental disabilities lack the capacity to learn from their mistakes and therefore be shelter from opportunities to make them. Sheltered from ‘getting this wrong’ we’ve been unable to learn and grow the way that most ‘normal’ people have: by screwing things up and having to live with the consequences of screwing them up. One of my long-term staff has often put it this way: the biggest right we take away from people with disabilities is the right to make a mistake. It was only when staff and friends let me screw up, did I start to blossom into what I considered to be a fully functioning human being.
So, what is the being take away from all this? Two things:
- The focus of support has to be on quality of life as define by the person being supported not their parents, friends, program manager, government social worker or anyone else. This is what in my opinion the government should be focused on: not forcing service providers to fill binders with charts, graphs and reports; with acronyms labeled on their side, that just to prove that their doing something, but that no one ever reads.
- Listening to people with disabilities is not just key it is the ONLY key! It took me years to finally get people to really listen to me and I can clearly communicate. Others are not so lucky but with time, patience and redirection of all the charting energy into something useful I believe that the vast majority of people with developmental disabilities can ultimately be heard.
Further what would be any advice that I would have for a self-advocate trying to get his or her voice heard? Well several things:
- Express your goals in life as needs instead of wants. Need is a much more powerful word to use. ‘I need to have a job’ implies that you do not feel like a whole person without it. ‘I want a job’ can be put aside and treated by others the same way as the phrases ‘I want a million dollars’, or ‘I want a pony’. They would be nice to have but really, you can live without them.
- Try to work down our needs to as short a sentence as possible. ‘I need to move’, ‘I need to work’, ‘I need to live on my own’ are all strongly expressed needs that are short and can be understood easily, while at the same time they are not easy for others to intentionally misinterpret.
- Understand the down side of your expressed need(s). As I said before the biggest right taken away from all disabled people but especially the Developmentally Disabled, is the right to make mistake. Let people know that you understand that there will be risks and that you understand this. Point out to people everything worthwhile has some risk and that you are willing to take that risk to get your needs met.
- Recruit Allies from anywhere. Get others to help you advocate for your needs. These could be family members, and friends, but they could also be staff, or a social worker. Anyone who you trust to be on your side when others start saying no.
- When others do start saying no, DO NOT change your mind. I’ve saved the hardest to last. Unless you are very lucky there will be at least one of the groups that have a say in your life that is going to say no when you start talking about what you need. If could be your mother or father, your physical therapist, your social worker, your doctor, or your program manager; it does not matter. Someone who has either emotional or financial power over you, is going to object to your goals because they believe that it is going to make their lives more difficult, or simply change it. Many times, they will not come right out and say no, but will suggest other ideas or compromises. Do not let them. Stay focued on your needs and do not agree to anything unless you have had a chance to talk to your allies and both you and they think what is being proposed can work for you. Otherwise say no. I know that can be tough; believe me I know, I have been there. But you have to stay strong. If you do not, it hurts you because you will be seen as someone who can be controlled: and it will hurt your allies because they now look foolish as people who put their necks out for someone who was not committed to getting the change in their own lives.
A tough road to be sure, but one that does get easier the more times you get your needs met. Unfortunately, it also gets harder the more times you bend to others will just to please them or to avoid a fight. So, fight.