We don’t want you to ‘include’ us, but thank you

Throughout history, the lives of people with disabilities were typically short and miserable. Up until the very recent 20th century, people with disabilities were displayed in circus “freak” shows, sterilized, and left naked and hungry in asylums and institutions where medical experiments were conducted on young children with developmental disabilities (“New York Willowbrook State School” — Google it if you have a strong stomach.)

And, of course, leave it to the Germans to take it to the extreme, beginning in 1939 with the Nazi T4 Euthanasia Program for children and adults with disabilities, which took the lives of 200,000 people and served as the Nazi lab for researching more effective and cheaper ways to kill, later implemented on Jews and other victims.

“We are better than that,” you may think or at least hope. Well… in the United States, a beacon for popular democracy and human rights, you only need to look back to 100 years ago to become aware of the infamous Buck v. Bell decision, one of the most shameful decisions in the history of the United States Supreme Court. This case upheld the forced sterilization of individuals with developmental disabilities and legitimized eugenics policies across the United States.

To put it gently, we don’t trust all of you, but thank you for offering us a Jewish Disability Awareness Month. We really feel better now.

I’m not writing this to make you feel guilty or feel bad. Well, maybe I am, but I also have another point I want to make: the philosophical model on which this entire miserable history was built has not changed much. The medical perception of disability, still widely spread and common within governments, hospitals, organizations, and the general public, views disability as a problem or defect that resides within the individual. It focuses on diagnosing, treating, or “fixing” the disability to make the person as “normal” as possible.

For instance, this is how social security in Israel and many other Western countries, to this very day, still views people with disabilities; it measures their accumulative physical and medical disabilities, and then puts a price tag on them and pays welfare accordingly (which is generally better than sending them to the gas chambers, but it’s based on that same perception.)

This perception ignores social barriers; it fails to recognize that many challenges faced by people with disabilities are caused by social attitudes, physical environments, and discrimination, not just the disability itself. It also tags people with disabilities as passive recipients of care rather than active participants in their lives. To put it simply, by focusing on deficits, people with disabilities are tagged as “broken” or “lesser”. From there, the road is not far to freak shows, asylums, and sterilization policies.

Is there an alternative?

Yes, there is, but it’s seldom practiced.

The social model for disabilities offers a completely different approach. It views disability as the accumulation of environmental and social barriers that a person must face in order to participate in ordinary daily life. This includes employment, education, and social engagement. In other words, the reason I can’t go to that trendy restaurant is not my wheelchair, it’s the freaking stairs!

Circling back, if Social Security wants to help me, I don’t want them to measure my various physical disabilities and throw money at me. I want them to assess the very specific and individual barriers that prevent me from fully participating in the game of life and remove them.

I am allergic to the term “inclusion.” I am even more allergic to the term “integration.” It implies that society is “kind” or “gracious” for its willingness to include people with disabilities in its wonderful non-disabled normal world. Thank you, but we don’t think your world is better than ours and we don’t want to be included in it.

People with disabilities are wonderful in so many ways and our worlds are full, rich, beautiful, challenging, and entirely our own. We don’t need to be “granted” access or acceptance into a society that assumes its normalcy is the gold standard. What we need is equity, respect, and the removal of barriers that prevent us from fully participating in the shared human experience on our own terms. We don’t need your permission to be let in or to “share your space.” We have always been there.

Our world is not lesser than yours; it’s just different, and different is beautiful.