Susan's Blog

Friday, May 23, 2014

One Size Does Not Fit All

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.








“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?”

What about a neighborhood of (mostly) such small houses?

— added by Kate Gladstone on Friday, May 23, 2014 at 9:25 pm

The state department of developmental services really frowns on it if they are too close together. Too “institutional.”

— added by Susan Senator on Friday, May 23, 2014 at 9:29 pm

“I” should mean individualized wherever it is and whatever that looks like…. Period.

— added by Ann on Friday, May 23, 2014 at 10:48 pm


— added by Jody Hoffman on Saturday, May 24, 2014 at 10:10 am

I have worked with students with Autism since 1991, and am also the parent of a 16 year old “Optimal Outcome” son. My first job in the field was at a residential school that also provided group home living arrangements in the community. From my perspective this placement option was superb. The homes and activities were of the caliber that anyone on or off the spectrum could appreciate. As you stated lifestyle choices need to be individualized, and meet the needs, desires, and abilities of each person. Happiness and contentment should be our goal. For those less able to communicate their choice, we have to be vigilant about assessing their behavior. Smiling and mentioning the name of a roommate sound like perfect indicators of a choice well made.

— added by Dawne Benoit on Saturday, May 24, 2014 at 10:15 am

I love Kate’s “neighborhood” idea, it’s disheartening to think that’s considered institutional. Justin seems to be most comfortable at school around other autistic kids- how wonderful would it be for him to live in a community like that, not just in a single group home one day. I hope attitudes change!

— added by kim mccafferty on Wednesday, May 28, 2014 at 2:38 pm

It seems like the pendulum swings from absolute right to absolute left in cases of discrimination. To understand why dds discourages “institution like” set ups one must know the history of cruelty to disabled persons in this country. for example, up until the 1930s there was a law stating people with physical disabilities were not allowed in public parks and such because it was demoralizing to the well-abled public. Wow. So, after the civil right movement the pendulum swings to the left and every single person no matter their ability or desire is to be integrated with the whole. for many on the spectrum, being mainstreamed provides only the illusion of inclusion. When you look closely, they are still very much isolated.
I think the country is moving to a less absolute vision on this issue. the problem is that Isolation of disabled persons is viewed as absolutely immoral by some people and agencies. We have to start thinking of it as a choice and look at each person’s individual desires and needs. We’ll get there.

— added by Lisa C on Thursday, May 29, 2014 at 12:58 pm

Susan- This really important post hits on some of the core issues facing our community.

My only objection is that “isolation” isn’t good for any human being and a more structured lifestyle in a group or disability specific setting doesn’t equate to “isolation.” Many people throughout history have gravitated to more structured group lifestyles and settings with mutually and voluntarily agreed on rules and limits to guide some (or a lot of) an individual’s daily activities. Think faith based groups, the military, even homeowner’s associations. Think family units! Group settings are not weird to most people around the world. Independent ones are!

Consider the basic issue of just who gets to define the fundamentally subjective and broad concepts of “community” and “institution”, The State or individual? These definitions control funding and funding controls the design very existence of infrastructure and resources. The current definitions embraced by the State(and their many allies in publicly and privately funded disability advocacy roles) seem to me to be so rigid, so inflexible, and so far removed from most people’s historic understanding of the concepts as to be almost comic. Almost. More accurately, they are absurd.

A 5 person house or small campus of a dozen does not equal a multi-hundred bed State Operated Developmental Center in the world I live in. To me, a “community” needn’t be a large metro area or suburb with plentiful public mass transit and a 24 hour 7-11 on every corner ( and with no other disabled people around) to be a good place to live and work. But the State is saying otherwise.

While I do understand and appreciate the State’s motivation to correct past injustices and conditions like warehousing and institutional abuse, to me the one size fits all approach brings with it massive potential for collateral damage, especially for those who want and need a more structured lifestyle in order to thrive. In other words, the people who are the most vulnerable in the community at large due to the impact of their disability. Their choice to opt out of independent living and full inclusion must be respected and options to do so funded without prejudice, even if some disagree with those selections.

I just don’t understand how inflexible, ideologically derived rules and mandates will work better than individually funded choice driven approaches.

— added by Gene Bensinger on Thursday, May 29, 2014 at 4:25 pm

This is my last post on this issue, promise!
I do believe some Trappist monks may disagree with the idea that isolation is not good for anyone. Maybe some others as well. But we are talking about disabled persons here and I believe you are right, ‘isolation’ is the wrong word. Choice is the key, I think. The agencies should move more to the middle ground on this issue.

I have taken some heat for sending my child to a private school that teaches mostly kids on the spectrum. How could I give up the inclusion component of public school? Sorry, I wasn’t feeling particularly included and I don’t think my son did either. Nor did he get what he needed academically. I like the kids he goes to school with and I would be thrilled if he made friends with any one of them.

— added by Lisa Clements on Friday, May 30, 2014 at 10:08 am

Lisa, post away! Especially given that your words are so apt…

— added by Susan Senator on Friday, May 30, 2014 at 11:02 am