Editor’s Note: The following post expresses the personal opinion of the writer. As with all contributions to the Disability in Focus blog, expressed opinions are not necessarily those of the Council’s membership. The NJCDD welcomes active conversations around issues important to people with developmental disabilities in New Jersey. We hope you’ll join the conversation in the “Comments” section below.
Disability is, and always has been a sensitive topic to explore. At times, this can make it difficult to deal with the reality of the situation. After all, even the words used to describe the topic are a source of contention. This brings us to the debate regarding “person first language” as opposed to “Identity first language.”
The official position of the NJCDD is that, when describing someone who has a disability, the phrasing should always reference the person, followed by the disability status. This makes the common phrasing “person with a disability,” because it focuses on the fact that that a person is important beyond the reality of their disability status. This is an understandable point of view. It is true that people who have disabilities are more than their disabilities and that their disabilities do not define who they are. It might sound like an appropriate defense to say that, as a person, I am not disabled, simply because I am a functional human being with unique qualities that would, or could be present without my impairments. It is accurate to say that my personality matters much more than my impairments. It is accurate to say that my impairments should not stop me from living a fulfilling life with my own hopes and aspirations. However, here is the reality that many in the disability community, members and allies alike, may feel uncomfortable hearing: I am disabled.
Before anyone tells me I’m selling myself short and defining myself by my disability, let me be perfectly clear that my status as a disabled person has absolutely nothing to do with my worth as a human being. It doesn’t even have anything to do with who I am, but disabled is what I am. I am disabled because societal infrastructure norms and culture literally disable me from functioning the same way as someone who does not have a diagnosis that would label them as “with a disability”.
This understanding of disability is also addressed with the knowledge that while some people refer to medical diagnosis as what defines disability, I do not (always) believe that. In contrast with the medical model of disability, the social model of disability states that societal barriers are what disable people with impairments. When I cannot get enter a restaurant, my disability is not present because I have a medical diagnosis of cerebral palsy; my disability is present because I am using a wheelchair and the restaurant does not have a ramp. My cerebral palsy is and always will be my diagnosis. However, in that instance, my disability is the fact that I can’t enter the building. Being unable to enter disables me from full participation in places of public accommodation.
The activities of daily living that I struggle to do is as a result of several factors that disable me, and are products of my environment. Stiff muscles and a curve in my spine are impairments. The need of a walker and a wheelchair result in disability. In places that are accessible and readily accommodating, the effect of disability is sometimes offset. This leads to a confusing, but nonetheless true phenomenon. Despite the fact that I have, and will continue to have cerebral palsy, and my physical conditions are likely to stay where they are, the degree to which I am actually disabled is not a constant. In places where a (usually) disabled person is perfectly accommodated, one’s disabilities may be hardly present at all.
This is where I might part with people on the council. What makes someone disabled is not their medical diagnosis. It is not their physical, emotional or intellectual limits. Disability isn’t something a person has. It is something that a person’s environment does to them.
This is why I will consider myself substantially more disabled sometimes than I am at other times. My physical skills and degree of executive dysfunction will not have changed, but my physical or emotional setting always has the potential to change.
There is no adjectival form for people with cerebral palsy, but as I’ve said, CP is my medical diagnosis, not inherently my disability. That said, I am a wheelchair user and I am spastic. These are ways to describe what I am (emphasis on what, not who).
To understand why identity-first language might be appealing to some in the disability community, consider why we almost never refer to “people with blindness” or “people with deafness”. My best guess is that, for someone who is blind or deaf, these characteristics are not simply an incidental part of who they are, but something that becomes part of their everyday reality, part of their person as a whole. To separate a person from their disabled identity is to place a value judgment on it.
This line of thinking is especially common when discussing autism. Person-first language would suggest that autism is one layer of a person, underneath whom is a so-called “normal person” struggling to present themselves. To say that someone is a “person with autism” might suggest that they autism is something wholly separate from the person, instead of something that informs an aspect of their being; that to “have autism” is to have an illness one should want to recover from. Autism is thus not considered a part of who someone is, but something that someone must carry around with them, something that must a burden to “handle.” This line of thinking dictates that these individuals will be, and in fact, deserve to be, in continuous struggle, and that the responsibility is on them to either suppress their struggles or be subject to constant pity. Pervasive is the belief that their differences are things to avoid.
This can be dangerous. More and more, as those with impairments are able to integrate into society, the burden is on us to conform to ableist standards and to acknowledge our medical diagnoses as inevitably debilitating and a source of shame. We have different strengths and weaknesses, just as the non-disabled population does. The irony is that not being disabled is such a norm that the rest of you wouldn’t even know how to describe yourself if we did not exist. I have cerebral palsy. I am physically impaired. Whether that impairment has to rise to the level of disability is up to us and those around us. An accessible world for all is possible. If we’re all willing to listen, what barriers would be left to disable us any further?
Written By: Jeremy Einbinder