Talking about disability

Unlike other issues of diversity and inclusion disability often requires engagement rather than merely restraint from being insensitive in our interactions with one another. Very often, if we are open to learning about people, who don’t look like us, pray like us, or share the same gender/sexual orientation as us we can get along with one another fairly easily. At the very least, if we refrain from assuming our less informed assumptions are correct we’ll avoid embarrassing ourselves.

Interactions with individuals with disabling conditions often require a different set of interactions. It is not unusual for a person with a disability (PWD) to have a need to interact with their environment in less common ways. If the environment is adapted to include PWD there is no problem. If, however, the environment is incompatible with the capacities of a PWD there is often a need to adapt the situation or the environment on the fly. This is a statement that is true for all people at all times. Whenever we are in a hostile environment, too hot, too cold, violent, etc. we need to either adapt or vacate the environment. Sometimes we can do this by ourselves and sometimes we need to work cooperatively with others.

What’s the matter with you?

It’s not uncommon for a PWD to be asked “What’s the matter with you?” It’s a question that could be asked of any one at any time. If we were being completely honest with each other, the likely response would be “Where should I start?” It’s a fair assumption that the question is being asked in reference to a perceived disability. Whether we recognize it or not most people have a mental model of disability and what it means to have a disability. What’s the matter with you?” is often a function of the medical model of disability. In short, the medical model supposes disability to be a function of abnormality in an individual. Disability is a problem to be diagnosed and fixed through medical procedures. If there is no medical solution to the disability it’s the individual’s problem. There may be telethons, societies for the prevention of, and associations of the, but disability remains an isolated problem unrelated to people not affected by the disability. There are a variety of models of disability. They tend to overlap one another and don’t necessarily explain every situation.
The socio/political model of disability has been popularized over the past 50 years. Under this model, disability is seen primarily as a civil rights issue affecting people who do not conform (physically or cognitively) to (a highly ambiguous) definition of what is “normal.” The Americans with Disabilities Act (ADA) of 1990 (amended in 2008) was intended to address some of these issues. We can see the impact of the ADA on the built environment through standard features such as buildings with street level entrances and Braille annotated signage.

These models of disability are invisible most of the time but are at the heart of most conflicts related to disability rights. For example: an individual who relies on a wheelchair to get around buys a ticket to a concert in a public place that is not wheelchair accessible. The operator of the venue could hold the position that they have no responsibility for the personal problem (need for a wheelchair) of the ticket holder. The ticket holder may respond that they are a member of the public who bought a ticket to an event open to the public, in a public place, and has a right to expect safe access to the venue. The dispute becomes one of mental models of disability rather than one of the right to access public spaces. This example is relevant at the time of this writing as the U.S. Congress considers a law that would give the venue operator at least six months to correct the problem of public access. Persons who view disability using the socio/political model contend this law would allow the venue 27 years plus six months to achieve public accessibility to a public space.

The risk of talking about disability

One of the biggest challenges in talking about disability is it can be a treacherous road to travel. We generally try to avoid telling others that we have little understanding of a topic. On the other hand, the failure to disclose our ignorance surrounding disability can have the effect of shouting it from a rooftop.

A universal challenge in communicating on a personal level is that of respecting personal boundaries. When it comes to talking about disability those boundaries can seem more like a very thin thread at the top of a high cliff than a steel door marked “No admittance.” A major problem can be the fact that, sometimes, we have no idea who is on which side of that boundary: one side is populated by way too much information while the other is really none of your business. I’m of the opinion that you can ask me anything you want about my blindness, as long as you are prepared to hear me tell you that was a really offensive question (the question, not you).

As an example: There are very few options when it comes to bathrooms for a person who uses a wheelchair. They simply must have access to a bathroom equipped to allow wheelchair access. Once the conversation gets into the specifics of what the individual is going to do in the bathroom, the conversation is quickly at risk of getting into the realm of “too much information (TMI).” The challenge is to recognize that both the right to fully engage in the public sphere and the right to personal privacy need to be respected.

Talking about disability isn’t really hard. What’s hard is being comfortable with (sometimes) awkward conversations. If we remember the things we learned in kindergarten: listen to each other, make sure everyone has a chance to participate, etc., we’ll all be OK.

Join the conversation

Our next MoMS Connectors Table conversation is focused on Microaggressions and marginalization. If you’re curious about Microaggressions and marginalization, here’s a safe space to explore the topic.
Tues., Nov 14.  All are welcome to join in this first-person Conversation. For more information and to register, go to:

Nov. 14 Mainstreaming on Main Street Connectors Table

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