Wednesday, March 17, 2010

What Is Inclusion?

Last week I forced you to remember the 80’s hit “Working for the Weekend,” by Loverboy.

To make up for it, I present a much more palatable 80’s hit – “My Hometown,” by Bruce Springsteen.

Of course, there is a reason I was thinking about this song. The lyrics are classic Bruce, capturing a universal mood in just a few rhymes. In this case, it is a melancholy reflection on the importance of feeling connected to something bigger than yourself - your community.

At Imagine!, we have always looked at ways big and small to allow our consumers to seamlessly integrate into their communities. Here’s an interesting example of a small effort that can make a big difference: some vans that are built with wheelchair lifts have a roof line raised higher than what you would find on an average van. This is to accommodate the person sitting in a wheelchair whose seating is now higher than the standard seats of the van. The unfortunate result of this design is that individuals in wheelchairs who ride in the van are up a little too high to look out of the van window comfortably without bending their heads down.

This means that a driver in a vehicle riding alongside the van can instantly see there is something “different” about the passenger in the van, even if they can’t exactly see what that difference is. At Imagine!, we have made a conscious choice to purchase some accessible vans with lowered floors, so a rider in a wheelchair is not instantly recognized as different. Lowered floor vans do not work for every wheelchair user, however details are important in quality services. It seems like a small thing, but it can make a tremendous difference in terms of perception.

I’m writing about this now because there have recently been a couple of very successful events in our community designed specifically for individuals with developmental disabilities. I won’t mention specific names of the events because my point here is not to disparage the supreme efforts put out by caring, dedicated people who are sincere in their desire to recognize and support people with intellectual challenges. By all accounts, the events were tremendously successful and the participants had a great time. Knowing all that, and acknowledging the powerful impact the events had on all participants, I wonder if we have more to learn. Is it possible that a design for inclusion unintentionally serves to separate the individuals from their community? The salient feature of participation is a disability. Is it possible that what is intentionally meant to show diversity, indirectly tends to result in a segregation? It is the darnedest thing. I am unresolved on the issue.

It is up to us in the community of providers for individuals with intellectual and developmental disabilities to discover how we can harness the spirit of volunteerism that was so prevalent in these events and together learn about creating a long-term approach that strives toward full inclusion as its final goal.

Then again, what do I know?


  1. Mark, I could not agree with you more. I am sad that these types of events are my son's only opportunities to get out and have fun. I know they are put on with good intent. But... I had a very different vision for him when he was little. His opportunities seems to be shrinking.

  2. Growing up we were taught to "play to our strengths", and thus we are later defined by our strengths; "She is a great musician." or "He is an accomplished writer." It is out of character that well intentioned events and the entire service system for people with intellectual disabilities are defined by challenges instead of strengths. Imagine inviting the accomplished writer into a meeting to discuss everything he can't do and needs help with? ... and then handing him the report at the end of the meeting?

  3. Isn't it possible that this is not an 'either/or' situation, but instead a 'both/and' situation? Sometimes I want to socialize with work-related friends, sometimes with relatives, sometimes with other families raising children with disabilities, sometimes with old friends from before this phase of my life, sometimes with politcal allies in my community, sometimes with people who enjoy the same music I do, sometimes at events that will draw a wide diversity of individuals & once a year the Scottish-Irish Festival to connect with at least some of my roots.

    So why wouldn't I want the same diversity of venues for my child? There may be times when he is most comfortable with a group of neuro-typical friends and other times when he will feel most safe & accepted in the company of kids who share his diagnosis. I was a huge advocate of inclusion for him in school as long as it set him up for success, but once the schools could no longer accomodate his needs, I became, reluctantly at first, an advocate for a more restrictive placement where he felt safe, understood, accepted & appreciated - and was able to start learning again. My hope for him as he moves into adult services is that there will be just as wide a variety of options for him as for anyone else. If he chooses to hang out with others with disabilities some of the time, or even all of the time, as long as that is his choice, that's OK. Sure, I would prefer that he be able to live, work, play with & be accepted & respected by a wide variety of people in a wide variety of venues. I hope to continue advocating for those options for him, but ultimately he will choose friends & activities according to his own comfort level. I feel gratitude to all who create new options, no matter whether they are perceived as inclusive or non-inclusive. How about an exit poll to ask participants, "Did you have fun here? Would you like to do this again?"