Self-Segregation in the Disability Community

Throughout my career as a parent/disability studies student/advocate-ally (nearly three decades) there have been moments when I have found myself at odds with the larger disability community. For the most part, I agree with, and want to be a part of the movement to create change that benefits people with all types of disabilities. But, every now and then, I do something that seems to fly in the face of the core theories of “the movement.” Today is one of those days where the cognitive dissonance engulfs me to the point where I have to sort out my thoughts by writing them down.


The biggest, most political assertion of the movement involves “inclusion.” Whether in the context of schools or communities, people with disabilities have been historically excluded. As dedicated advocates fight in the trenches to remove the barriers around them, the natural evolution of thought has gone from silent acceptance to robust objection to forced segregation.

On the subject of forced segregation I completely agree – it is every person’s civil right to be included to the fullest degree desired.

My first experience of “theory vs. reality” happened when my son was still in grammar school. After years of whole hearted belief in the IDEA, my son was physically injured and put in harm’s way because of my insistence on inclusion.  As a mother, I was forced to choose between my principals, and my son’s safety. Safety won.

Since then I’ve been more understanding of different perspectives on “full-inclusion.” I have friends who believe that it is every parents’ responsibility to fight for inclusion at all levels. I also have friends who are more comfortable with segregated environments. I can understand and support both views because I’ve been there – in both places.


I truly believe that someday we will get to a place in society where inclusion will be a natural occurrence.  Until then, who is to say what works best for each individual? Does anyone have the right to shame someone else into forcing the issue? I don’t think so. I have paid a high price for not toeing the line when it comes to “all inclusion, all the time, in every instance,” and I will never judge anyone as harshly.  I believe we should all advocate for legislation that affords equitable rights for all, whether or not individuals choose to use them.

Now that my own priorities have shifted from school to adult concerns, I have found that there are still several hot button issues that never fail to inspire impassioned debate, i.e. Special Olympics, and segregated employment. Another issue that has been getting a great deal of press lately is living arrangements for people with intellectual and developmental disabilities (I/DD).  In an article for The Atlantic, author and mother of an autistic son, Amy S.F. Lutz tackles the debate around large campuses like Misericordia – “a Chicago facility that treats 600 residents with a range of developmental disabilities and has over 400 families on its waiting list” and the changes to the Home and Community Based Services (HCBS) Medicaid waivers.

The entire article is well written an offers a balance of perspectives but one section jumped out at me:

Many parents and providers I spoke to at congregate settings across the country prefer the term intentional community, which likens a place like Misericordia to any planned residential development in which people choose to live together because of certain shared characteristics. That sense of common ground is what’s often lacking when individuals with I/DD live in integrated housing, surrounded by neighbors who don’t understand them.

Intentional Community

Intentional Community

That notion, of actually preferring to be with others who understand them, without the pressure to perform or be someone they’re not, is also a right we, as parents and allies should be able to fight for. Right now, politically, that possibility is being threatened by the very people who claim to have the best interests of people with disabilities in mind.  The advocates who are fighting to do away with sheltered workshops and intentional communities are hoping that by eliminating these segregated settings, society, including people with disabilities, will be forced to embrace inclusion.

An earlier article in The Atlantic talks about self-segregation in a completely different context. Robert P. Jones looks at how people of different races view social problems and political movements differently because of their limited access to different perspectives. His argument is certainly one that champions inclusion. And yet, it also highlights the fact that people, who have the power to make their own decisions, choose to surround themselves with others who have similar world views.

So do we, parents and people who have the privilege of political voice, have the right to take away that feeling of belonging? Would you be grateful if someone forced you to integrate into a lifestyle where you felt othered in every setting? What if you had no political voice? Would you hope to be chosen as the test subject for a new, better society regardless of the pain you might personally face?

I don’t know for sure that every person with an I/DD would choose to be removed from a job they’ve had for years, leave the friendships they’ve made there, and be forced to live with strangers in the interest of the bigger picture. Yet, when events, living and work situations are designed specifically for people with I/DD, the organizers are accused of perpetuating the bad elements of exclusion and setting the inclusion movement back by failing to embrace the new rules.

Individuality vs Group Think

Certainly some people are excited by new opportunities and chances to form new relationships in inclusive settings.  Some, on the other hand, prefer and actually thrive on routine and predictability. Some people with I/DDs reject society’s expectations and insist on being involved with typical peers. Others enjoy the comfort and solidarity of not having to explain themselves or worry about communication problems and impatient neighbors.

That’s the point really – we’re all different.

We don’t expect all neurotypical people to have the same beliefs – why should the disability community be any different?

We should all have the choice to live, work, and play where and how we want.


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