[This text was originally published in AREA Chicago #14 in April 2014]
Our society routinely treats kids unfairly. They are misunderstood, written off, and talked to as if they are younger than they are. Adults assume that kids are unable to make their own decisions and unable to think for themselves. This changes as kids get older, until at some point, many of them will ultimately treat a new generation of kids with the same disrespect. People with disabilities experience much of the same infantilization by society, but they experience it throughout their whole lives. In many cases the treatment is worse. It isn’t simple ignorance to the fact that people with disabilities can think for themselves, which is sometimes the case with kids. There exists a fear of disability and a need to keep people with disabilities separate, away, “safe,” and dependent. For this reason and many others people with disabilities are treated like children, our issues get grouped with those of children, and they are discouraged from considering having children of their own.
I am a 30-year-old woman and I use a motorized wheelchair for mobility 100 percent of the time. I experience childlike treatment and paternalistic attitudes from strangers, family members, friends, coworkers, and healthcare professionals. Bus drivers yell at me if I move my wheelchair without their permission. Entering a restaurant the other day, I was greeted with no hello, but only a collective “awww!” A stranger once felt the need to tell me, “I don’t know what I would do if that happened to one of my kids.” At an OB/GYN appointment, when I inquired about being tested for sexually transmitted diseases, my doctor asked me, “Why would we do that?”
These experiences are just a snapshot, and I know it would multiply by the thousands if I asked my disabled peers in Chicago alone for examples. They illustrate how persistent the idea is that people with disabilities cannot and should not have the right to participate in practices typically associated with adulthood, including being sexually active, parenting, or participating in the workforce. I struggle with understanding this perception, perhaps because I spend most of my time around people with disabilities who do all of these things, and often better than nondisabled adults I know. This says to me that people need to spend more time examining the way they think about people with disabilities.
One result of these ingrained misconceptions is that programs and services for disabled people get grouped with children’s or youth issues, if they have not already been attached to the senior and elder category. There is, of course, overlap: People with disabilities are both under eighteen and over 65. But the needs of the disability community are nuanced and unique, as are the needs of every community.
By failing to view disabled people as whatever age they are, individuals and service providers alike fail to understand their needs and desires. Disability-specific services, both public and private, are paternalistic in the way that they are designed and administered. Decisions are made “in our best interests,” by people who have no connection to the issues. Consumer control, the idea that disabled people must have a say in decisions that affect them, is constantly threatened.
Ironically, while the association between disability and children persists, young people with disabilities don’t even benefit from it. The miseducation of people with disabilities, particularly those under age 18, continues to be a travesty. It is, in a way, no mystery why the idea of a perpetual childlike state of disabled people has hung around for so long. It is assumed from day one that they will not thrive in the community; as young people they are deprived by their parents and by their schools of the opportunity to learn the tools and ideas to live independently.
Keeping disabled people—who are 20% of the population of our country—outside of all types of boxes that are labeled and reserved for “normal adults” only serves to keep our whole society from recognizing that disability is simply a part of human diversity. It is well past time for disabled people to stop being infantilized, institutionalized, and sterilized. Ableism, like all isms, only serves to keep the existing, antiquated power structures in place.
A final connection and point of interest for me is the fact that young people, with or without discernible disabilities, are the group that has the greatest ability to make me feel very aware my physical disability. This awareness is neither positive nor negative. I don’t feel that kids think of me as a child, but perhaps out of some perceived solidarity they see me as simply human. Rather than belittle me, their unfiltered, curious stares remind that I am different. While I feel rage when adults don’t possess the tact to keep their stares and intrusive questions to themselves, with younger folks it feels like they actually want to know about my life. If the situation is appropriate, I will usually take a few seconds to explain that I use a wheelchair since I’m unable to walk, or that it is not okay for them to reach for my controls to drive. It isn’t that I feel that adults are not worth my time and energy, though that is part of it. If they haven’t learned respect by this point in their lives, I unfortunately don’t have much faith that they will learn it through a ten-second interaction with me. Exposing young people to disability early on in their lives and showing that disability is a naturally and commonly occurring thing feels like a more sound investment.
I recently participated in a Saturday morning workshop for third-graders. Several disabled colleagues and I presented to them about disability awareness. We openly discussed different types of disabilities, and demonstrated some accommodations and adaptations people with disabilities may use to live their everyday lives. We left time at the end for the students to ask any questions that they still had. It was a safe space to be curious or make a mistake. I left the workshop with a really good feeling that we had made an impact. I believe that many of the students who attended that workshop will have a more open mind about disability and will go on to educate some of their peers about disability. Hopefully they will even educate some of their elders.