Where Do I Belong?

Over the next few months and years, I will have the opportunity to write about faith and disability, and how those experiences connect with my personal story. I want to say that it is against my nature to embrace too heartily any set of ideas that magnifies differences and distinctions for political gain. I don’t even really want to make anyone feel guilty, at least unnecessarily, so the stories I tell are my own. If a particular feeling or experience of mine doesn’t seem fair as a criticism, you’re free to let it go, and to pay it no heed.

In the nature of being different, or by virtue of being an outsider, there is something notable about each of us to which those terms apply. Various forms of discrimination experienced by others came about because those differences became a focal point of oppression. I think it fair to say that we have legislated against discrimination, especially where this discrimination involves things people cannot change about themselves. For my part, I concede and agree that various forms of discrimination also have historic and structural components. This is not to say that each of us is personally culpable for structural racism, or racist outcomes, to take a contemporary and salient example.

Yet in my experience as a disabled person, I can draw a distinction between overt “ableist” hostility, and a more polite unspoken ostracism. The former has not been common in my experience at all. The latter is harder to pin down. On the one hand, I don’t consider myself one who is owed things from society at large, and I have a natural constitution decidedly opposed to blaming others for my misfortune. On the other hand, why is simply trying to live in this society so difficult for people like me?

We can look at particular things that serve as structural examples of ableism, an unjust preference for the comfort and ease of able-bodied people. Discrimination against those with Down’s syndrome and those others who work in sheltered workshops takes the form of wage discrimination, and unjust exemptions from minimum wage requirements. (Of course, abortion after prenatal testing stands as a particularly egregious example of injustice against disabled people.)

People with disabilities often face state-sponsored opposition when they try to marry, and various forms of social assistance are contingent upon enforced poverty. Living disabled is extremely expensive, and yet gainful employment often jeopardizes assistance programs that pay for mobility devices, personal care assistance, and other needed technology. In other words, assistance is often withdrawn when it is most needed, and the incentives in our system punish productivity and wealth creation.

Many public and private buildings are literally not accessible to people like me, and others with mobility challenges. The Americans With Disabilities Act was signed into law in 1990, now nearly 32 years ago. It was understood and accepted that some changes related to modernization and access would be slow. Yet I think 32 years is quite long enough. I also wonder if the many exceptions governing access were too numerous. It is worth noting that none of its provisions apply to private businesses and associations. Actual physical access in this sphere is spotty, and any employment discrimination that occurs in private settings—- like churches—- is likely to go unpunished.

On the one hand, I have a strong preference to work only for myself; “employee” is a word that has never seemed to fit me. On the other hand, perhaps I have decided this because of a profound lack of access to employment opportunities.

It is estimated that 80% of those Americans who would be covered by some provision of the Americans With Disabilities Act are unemployed. I can tell you that such a number—- if true—- does not represent the true proportion of us with useful skills, education, and passion. Even as we recognize that certain disabilities are severe enough that those who live with them will never be productive in an economic sense, we do need to come to terms with the forgotten people who have much to offer, but have not been given a real chance.

I try not to spend a lot of time dwelling on the alienation produced by abled discomfort with my disability. If I find my disability uncomfortable, I sympathize with those who are also uncomfortable. Yet I’m just trying to live; I’m just a guy, pretty much like all the other ones you know. I do not say that I am unaware of my disability, or that it does not affect my experience of the world. Even so, I am far more hobbled by a lack of understanding and connection than I ever will be by my diagnosis.

Certain advocates call this the “social model” of disability. I want to have a place in society, like anyone else. To paraphrase one activist, no amount of positivity will carry me up that flight of stairs. No one likes an angry activist, least of all me, but I do perceive that I am on the outside looking in, and that this alienation—- which is often very practical—- is not entirely of my own doing.

I would encourage all of you reading this to think about your friends and neighbors with disabilities. Think about how you could use your power and influence to help your neighbors, to help us be an active part of society at large. I personally don’t always mind being someone’s “inspiration,” but I would rather have a career and a family.

Jason Kettinger is Associate Editor of Open for Business. He writes on politics, sports, faith and more.