Susan Senator

The institutions are closing. The sheltered workshops are closing. Group homes must be small or else they come under suspicious scrutiny. We don’t want people being clumped together by disability. We don’t want people isolated anymore. Damn right. We want inclusion.

Ah, Inclusion. That beacon on a darkened sea, that oasis in the dessert. The siren song that lures the autism parent onto the rocks.

Hey, I’m all for it. Really. How could I not be? Inclusion is about fairness. Inclusion beckons the outlier into the warmth of the crowd. Soon after Inclusion, there is no more Other, there is just Us.

That’s good, if it can even happen. And usually when people write about inclusion it is to assess how well we do it. Does the school accommodate well enough, adapt curriculum, provide an aide, pull-out lessons, small class-size (any and all)? We also support inclusion in the form of the open door. We now open up the colleges, for example, by offering disability services, or even targeted programs. Legally we must open up the work place and be careful not to discriminate. Lately there is even more focus on vocational training as well as raising awareness in employers. The typical conversation about inclusion is about bringing people in, opening doors that were closed, and reducing isolation.

What is the answer, though, if isolation is good for the person? If the person prefers isolation? Especially in the case of autism: someone with autism might not be able to function well with talkier types, with the mainstream people who are all about including. Someone with autism might not feel understood by normals, by neurotypicals, or even by the larger crowds that inclusive people inhabit.

What if the person wants to live with others like him, where he may feel safer? Don’t we have to take that into account, in the name of Self-Determination?  Or, if we don’t know what he wants because of communication issues, what if the parents or guardians want him with people who have similar challenges, for whatever reason? Maybe it makes staffing more straightforward, for example the house begun in Sharon, Massachusetts that is all Higashi-educated young adults and Higashi-trained staff. This is fine with the Inclusionists, as long as the home is fewer than 6 people. But what if these families want their loved ones to live near others with the same kind of education and worldview?

More than 5 people and you start to have an Institution, and that is frowned upon. I don’t think that’s fair. I think we have to be more individualized in our approach and go with what the person wants — as best as we can. We have to be careful not to be dogmatic and act institutional in the name of a philosophy. Forcing everyone into the same kind of living situation of small group home or even smaller shared living set-up — and refusing to fund anything else — may not be taking into account what the person in question wants.

Furthermore, why do we say that people need “normal” role models? Why isn’t it enough to be with other people, period — even ones as disabled as him? My own autistic adult son Nat loves who he loves. One of his loves is a young man who is really affected by autism. Jumps, pounds his chest, doesn’t talk much, runs around nonstop. Nat smiles alot around this guy, and mentions his name quite a bit. What will Nat ever learn from him, you might ask.

Why is that even a question? You love who you love. Each one of us is a person, a full-on human being. Why is it better for Nat to be around someone who talks? It’s better for Nat’s mental and social development, I know that. But doesn’t this friendship also have merit, particularly in that Nat chooses to be with this guy sometimes?

I venture to say that the same goes for Sheltered Workshops. I don’t like a sheltered workshop when the person can and wants to work outside in a more normal job environment. I don’t believe people should be denied minimum wage. If you’re doing a job, you deserve to be compensated. But I do feel that if you have a really hard time being more out in the world with behavioral pressures and social subtleties and hard ass bosses — maybe you should be able to be sheltered. It’s about the person’s needs, desires, and abilities. Opening the workplaces:  definitely. Assume that every single person should be in the workplace: not so much.

If you think we can close all the workshops and get every single person into a “real” job, then do it. Show me how you can do that for every single person so that no one falls through the cracks. If we can get every single disabled person a “real” job, then great. Do it. If that’s what they want. But I don’t believe that is something that’s for anyone. One size fits all rarely works for something as relatively simple as clothes. One size fits all is pretty much impossible and irrelevant for individuals.