Learning to Respect People’s Dreams

“Really, an astronaut?” Sometimes dream jobs expressed by job seekers with disabilities, especially those entering the employment arena for the first time, can be challenging for professionals to hear. But an element of good career planning includes the ability to be open to possibilities and what they might mean, even those that seem obviously “unrealistic.”

As I explain in this brief video, when people reveal personal information, it always can teach us something. Dreams, however seemingly unreachable, must be treated with respect. This doesn’t require us to accept a mission of pursuing every lofty goal a job seeker has. We cannot promise to make someone an astronaut. But helping people to approach their dreams is always possible. And learning what we can from their desires can help guide us in their job search. Watch the 2-minute video to get an idea. 

This clip is from “Let’s Get Everyone to Work,” sponsored by the 
Florida Developmental Disabilities Council and produced by Diane Wilkins and Camry Greenwood.

Token Inclusion: A Dangerous Perversion

The concept of diversity as it is applied to including people with disabilities in common community settings is well-understood and embraced by most people in principle. After all, no one wants to be seen as “anti-disability,” and diversity is a highly valued buzz word these days. So, as a concept, inclusion is a nice, progressive idea to almost everyone… except when it requires effort or deep thought about what it truly entails.
I focus a lot of discussion on this blog on the harmful effects of obvious segregation – in institutions, large congregate residences, sheltered workshops, and other facility-based day programs. But what happens when an effort is made to provide inclusive experiences that fall far short?
Unfortunately, what often happens is that such effort disguises the original problem. What passes for inclusion is held up as an example, when in fact it is not inclusive at all, just a bit less segregated. This is dangerous for people with disabilities. It blurs the issue of “true belonging” into an incomplete “solution” that makes people think we have made segregation a thing of the past.
For example, a student with a disability is brought into gym class with other students without disabilities. Be she is not offered an opportunity to participate, and so “helps” the gym teacher, which largely means holding the teacher’s clipboard during class. Or eight workers with disabilities from a sheltered workshop are given space in a business location where they can continue their sheltered work, but are now considered “integrated” because they work at a real business building.
The school then proudly talks about its inclusionary models, and the workshop highlights its integrated supported employment program. But are these examples of real inclusion? No, not at all. This is merely token inclusion, but these examples can make people believe that these types of approaches are useful ways to diminish segregation. One might argue these situations are “better” than where people were. But this is not the issue, nor should it be the standard. It is not even a compromise, as they provide little real benefit and mask the issue of non-belonging as somehow closer to being solved.
Segregation is not just a physical presence apart from others. It also is a social, emotional and psychological distancing. And being “included” does not just mean you are in the same physical space (see photo above). It also means you are participating to the fullest extent possible, in the same manner (with accommodations as needed) and with the same respect, privileges, and dignity as others in the situation. It implies the social role you are offered (i.e., I’m a member of the school choir) is meaningful, and you are a true peer among others in that setting, even if you require support or accommodation for your participation to be meaningful.
Another example of this issue can be found in the recent positive trends of corporate hiring of people with developmental disabilities. Unfortunately, some companies approached this by setting up new locations that are designed to contain a high percentage of jobs filled by workers with disabilities. Their efforts to include people with disabilities in their workforce is laudable, but the technique is flawed. 
If a company is interested in supporting the hiring of a diverse workforce, then why not develop an approach at all your locations for more customized jobs that can support many people with disabilities, and not just one kind of job in a few places. Again, the argument is not whether the people working in concentrated business-owned centers are better off than before. I’m sure they are, if only because being in a workshop is so below the norm of a typical work expectation for anyone. But why replace a tragic solution with one that still congregates people, and also directs workers with disabilities into a small career wedge where a job location matters far more than one’s vocational interests? 
This illustrates the confusion of a faulty approach with an actual solution. The danger then lies in people focusing energy and time in “replicating” this new perceived solution, instead of focusing on developing full inclusion – and that is the real tragedy. We really should stop inventing new “models,” and instead start customizing what is already in our communities so more people can access what all of us want – real jobs, homes, recreation, social opportunities, and more. It doesn’t take more money and effort, just a different attitude.

A Message from the Future

Hello friends, my name is Tramus. I have hijacked Dale’s blog to give you a message. I am from the future, the year 2050. If you read Dale’s blog, you must be what you used to call, a “disability service provider.” You probably have a building where people come to learn or work. Or a facility where the state pays you to house people with disabilities. Here’s the thing – I am here to warn you – you will become obsolete.
We found that it was a waste to build walls around people because they were slower, looked or acted differently, or had trouble learning. Turns out that when your goal is to help people who face challenges in life to have a good life, they have to actually be in real life to get anywhere. In our time, we found that we could provide much better assistance to people with “disabilities” (we got rid of that word a while ago) by supporting and opening up their own communities around them. 
Everyone has people they like to be with, things they really like to do, and everyone has something within them that can be productive for a business. Once you recognize that fact, you can help people build a decent home and work life. 
I have to tell you, it amazes me how long people can tolerate spending billions on things that are shown to have poor outcomes. Of course, it was that way with climate change, I guess. By the time there was a consensus, we had to abandon half our coastal cities.
Anyway, here’s my advice. 
Stop protecting your buildings, your programs, your job descriptions, and territory. Protect people’s rights to belong instead.
Stop trying to fix people’s shortcomings to make them community-ready. Assume they are a part of the community and start focusing on what people can do there successfully. 
Let go of your precious budgets tied to programs and buildings. Money should be attached to the people you serve. 
Remember to redefine your goals. No one needs a workshop. People do need help with jobs. No one needs a group home or an institution. People do need help to live in a nice home. Don’t confuse your tools with the goals. The goals are life; you just invented the tools, and they might not work the best. When you use the wrong tool, you sometimes mess up the goal. Ever try to hammer a nail with the back of a screwdriver? 
You have limited resources and you must spend them wisely. Every facility program takes something away from community building. Stop filling the buildings. Instead expand the variety of supports people can tap when they are working, at home, or in their communities. 
If you start now, you can be part of the change. Thanks for listening! I will now return the next regularly scheduled blog back to Dale. 

35 Year Anniversary of the Lawsuit that Helped Close Willowbrook

This month marks 35 years since the filing of a lawsuit against the infamous Staten Island, NY, institution for people with disabilities, the Willowbrook State School. This action paved the way for ending decades of horrid institutionalized conditions for people with developmental disabilities throughout the United States. How far have we come since then?

In my book, Raymond’s Room: Ending the Segregation of People with Disabilities, I try to show that, today, people with disabilities are still locked away from the rest of society. Perhaps they are not in the squalid conditions of Willowbrook, but they are still living lives apart from us – in institutions, day facilities, residential facilities, and other inventions of the disability industrial complex.

Dr. Mike Wilkins worked as a staff physician at the Willowbrook during the early 1970s. He was fired for his activities to try to make improvements there. The evening of his dismissal, Wilkins used his key to give Geraldo Rivera, a young television reporter, access to the school. Rivera’s film crew documented squalid conditions in understaffed wards. The series, Willowbrook– The Last Disgrace, won a Peabody award. It sparked public outrage that lead to a lawsuit filed on March 17, 1972, and a series of changes that still affect the disability system. From that lawsuit, a consent decree ultimately led to the closing of Willowbook in 1987 and a movement grew to support people with disabilities to live their lives in their communities.

Maybe what we need is another key from an insider. At least, that is what I hope Raymond’s Room can become…

More Evidence of the Ills of the Disability System

One of the things I talk about in Raymond’s Room is how some agencies in the disability industrial complex have lost touch with their mission. This recently came to light again in Minnesota. An AP article from January 21 wrote about the Star Tribune’s investigation of Minnesota Diversified Industries (MDI). MDI plans to layoff 250-300 workers, many of whom are workers with disabilities in their workshop making around minimum wage. At the same time, it seems the MDI management staff (and sometimes spouses) are provided “executive entertainment” including parties, spa vacations, and golf outings. On one trip to a casino, the executive director handed out $100 bills to gamble with.

As I point out in the book, this kind of behavior is not typical of the system, but it is symptomatic of the incoherence of the segregated model and the rules it works under. Segregation leads to powerlessness, and this type of self-indulgence is only one of the more obvious results.

It takes a community…

Hi everyone. Wow- writing and releasing Raymond’s Room has been an amazing journey. There is already a lot of information on the web site about who I am and what this book is all about – so I won’t explain all that here. What I would like to share in this blog is how this message of ending the segregation of people with disabilities is being received out in the world and how well we are getting the message out.

This week we sent out about 550 press releases to disability newsletters, newspapers and other media. We will follow that up with a regular mailing to about 850 media. The book is now also posted online on Amazon and Barnes and Noble. We have a press release up in our press room. Readers of this blog should feel free to access anything on the RR web site for distribution.

TRN is a very small publisher, and we can’t hope to advertise in big markets, especially with the minimal profit on this product (we priced it at $15 in the hope of reaching the public). We need to rely on network marketing through our friends and colleagues. We hope that you will read the book and that you will consider mentioning or reviewing it through any outlets you have – via newsletters, your e-mail lists, or writing an article about Raymond’s Room in any appropriate publications you have.

Also, please consider posting a comment online – people do make book buying decisions based on them. on Amazon or Barnes and Noble.

Many people have already sent their endorsements, for which we are exceedingly grateful, and we have posted them on the web or printed them in the book itself. We know not everyone can endorse the book, although that would be great, but as long as you let people know it is available, we will have hope that it will reach those who mght be open to the message and maybe keep someone out of an unnceccsary facility. Please contact Dawn Langton if you need any additional information. A story idea is attached, and further downloadable information, including a cover image, photos, audio and a text interview, is available on the Raymond’s Room website.

Thanks in advance. I really appreciate anything you can do to help this effort.