Our Own Independence

Welcome to the wonderful world of having a disabled sibling or in law. It's a journey that you either get or you don't get.

Next week, we are going to be attending an annual planning meeting where the Individual Service Plan for my autistic brother in law, "Bil", will be developed.

And, I have to face some uncomfortable truths.

The world for people with autism has changed dramatically since he was born almost 60 years ago.  And, Bil is finding it difficult to keep up.

He's gone from a world where people with disabilities were expected not to speak with their voice, and, instead, go along passively with decisions made by others.

He's gone from a world where people "like him" sometimes ended up in institutions with little hope and worse living conditions, to a world where people want him to be independent.

That word - independence.  People working with him are saying, that for Bil's long term good, he needs to live in an apartment where he would be expected to do most everything for himself.  He would need to provide his own transportation (his feet) or learn to use mass transit.

Other people with disabilities do that, but Bil has been waited on hand and foot by his mother for almost all of his life.  And he still expects things to be done for him by her, or by us (his siblings and in laws). He's never expressed a desire to learn mass transit, for example, and under the "People First" philosophy they can't give him that training unless he asks for it.

No, instead, he waits around until he knows someone is going to visit, and then he wants someone to take him somewhere.

Bil does need help.  But, at the same time, we deserve our own lives and our own freedom, when it comes to things Bil is capable of.

Bill is capable of walking - he has no physical disabilities.

He's capable of learning a lot, given the right training.  We've already seen glimmers of this in a day program he goes to twice a week (although, early this year, he will have to be removed from it, because of his "improvement".

But he has to ask to be trained for the skills of independence. We could say the system is stacked against him, and we can feel sorry for ourselves and yield to it.

We had a family meeting last weekend, and we aren't yielding.  To either the system or to Bil.

We may have to find our way differently.