Raymond's Room: Ending the Segregation of People with Disablities by Dale Dileo

There are so many people in this world who are passionate about ending segregation of people based on disabilities.  It is always wonderful to read stories of people who dedicate their lives to this very worthy cause.

The book starts with a story of the author working in an institution and the horrid conditions that one of the people there lived under.  It describes Raymond's room and how he was viewed as being so dangerous that he needed to be locked away in a room living in conditions that we cannot imagine.  Dale Dileo moved from this experience to dedicating his life to changing "institutional thinking".  He has seen much progress but the book challenges readers to recognize that although much progress has been made, there is still a lot of "institutional thinking" in the world.

A few parts of the book that really resonated with me include:

Group Mindset: I like the approach to thinking not only about institutionalization but also institutional thinking.  When we group people together based on a disability label we do many things.  The book pointed out a couple that we need to be very aware of.  First, other people will notice what is common to the group of people - so they notice the disability as opposed to noticing the person.  For people to be seen as individuals they need to stand as individuals.  If we put someone with the disability in the middle of people without disabilities, people again notice what is common to everyone - which is that they are human.  The second point that is made about group mindset is that when there is a group of people there is far less social interaction with others then when people are on their own.  Expectations change when there is a group.  Getting rid of institutions is not enough.  We also need to get rid of institutional thinking. 

Pre-requisite Skills: I really liked the analogy made in this book about being required to have a certain set of skills before a person with a disability is allowed to do something in the real world. People with disabilities are expected to learn skills in simulated environments while others are given the opportunity to learn these same things in the middle of real life situations.  Perhaps what hit home with me the most was when the author spoke of the time when we move away from home for the first time.  Did we really have all the pre-requisite skills needed for living on our own?  I know I didn't.  I phoned home to find out how to do my laundry.  I had to learn to budget by getting to the end of the month and realizing there was more month left than there was money.  I learned that I had to pay my bills on time when I lost phone access because I didn't stay on top of things.  I gained skills through the experience and through the need.  This is tied in to the concept of "dignity of risk" and something that all people have the right to.

Real Jobs: This is one that is near and dear to my heart as it is important to me that Mikey (my son) eventually have a real job rather than work work in a sheltered environment or spend his days in a "day program".  One key point from this section was related to thinking about the context of a job.  There is one story about a man who has the "behaviours" of swearing and spitting and they are worried about placing him in a job.  He ends up getting a job at a shipping dock and succeeds there partially because many of the other people who work there spit and swear.  In this context, it is not a "behaviour".  The other thing I found important in this section was the discussion around the need to fit in to the social fabric of a work environment and how someone who is supporting the employment of a person with a disability should focus on helping them to fit in rather than breaking down the tasks in the work environment.  Once a person fits in to the work environment, those around them tell them the tricks of the trade.  I like this approach as it mirrors what I feel is the most important first step with my students.  We need to get them looking to and interacting with other students to figure out what to do next as opposed to relying on adults for that.

Lots of other great things in the book. Well worth the read and lots that motivates and inspires related to ending of institutional thinking.  I think it also helps frame the idea of looking at individual needs and desires when planning.  This means there may be some things that are done individually - but that is not the same as "in isolation".


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