Wheelchair access symbol: white line drawing of a figure wheeling himself in a wheelchair on a blue background.

Things People Say and Do

Every so often, I’ll see a post with the title of “Things Not To Say to a Wheelchair User,” or something like that. I’ve even written a post along those lines. You can read it here if you missed it.

I don’t know why, but lately I have been on the receiving end of many comments I am sick and tired of hearing. When I share stories of these interactions with friends, they often express disbelief and wonder that I regularly have these interactions. But, apparently there are people who haven’t read the memo. This list of 5 pet peeves of mine is for all of those who STILL aren’t clear about what to say or do around wheelchair users.

1. NO SPEEDING JOKES!

We get it. Our chairs are cool, and they go fast. You might see us go whizzing by and think you’ll try to make a clever joke about us breaking a speed limit. DON’T make whatever comment you are about to make. Just don’t. It’s not original. It’s not funny. I spent the first 29 years of my life being the slow one. You bet your ass I’m going to speed and go fast now that I have the ability to do so!

2. We’re not going to run you over!

How many times have you walked down a hallway and encountered a wheelchair user approaching you from the opposite direction? Do you just keep walking or do you flatten yourself against the wall in fear the wheelchair user will run you over? When I used to work in an office building, this would happen to me at least once a week. I would be rolling down the hall towards my office, see a person walking towards me and get ready to smile. I stopped counting how many people literally stopped walking and put their back against the wall after it happened for the tenth time. It wasn’t a narrow hallway. At least four people could walk comfortably side by side down this hallway. Yet, strangers would cower in fear whenever I approached. One man even jumped into the stairway to avoid me – while I was still 20 feet away! He stood there until I went by before coming back into the hallway and resuming his walk to the cafeteria.

Here’s the thing – I have control over my chair. When I am going from place to place, I am constantly aware of what is around me and make minor adjustments to my pace and direction accordingly. Just like most people who walk, I am usually able to avoid potential barriers that might be in my intended path. I am not going to run you over unless you come to a sudden and unexpected stop directly in front of me without warning. Or unless you try to make a stupid speeding joke. If you do that, you deserve to have your toes run over. Twice.

3. I don’t care about your relative or friend who also uses a wheelchair, and

4. I don’t dream about a wheelchair that can climb stairs.

Sometimes, people will try to build a connection by telling me right away about someone else they know who also uses a wheelchair. Usually, the conversation goes like this:

Stranger: Hey, nice wheels. My neighbor just got a new chair like that.

Me: Thanks.

Stranger: Her chair can tilt and recline so she can take a nap in it. Does yours do that?

Me: No.

Stranger: Yeah, it’s amazing what wheelchairs can do. Have you seen that YouTube video of the chair with treads climbing stairs? I bet you want one of those!

Me: No, I’m good with mine thanks. (End Scene)

I’m not impressed by the fact that a person knows another wheelchair user. In fact, I’m more surprised when people tell me they don’t know a disabled person. Since approximately 20% of the population lives with a disability, chances are good that everyone knows at least one disabled person. So, telling me you know another wheelchair user as a means to form a connection really doesn’t help me feel more inclined to open up.

As for wheelchairs that can climb stairs – well, if we simply built or modified our environments so people of all abilities could participate in equality, we wouldn’t need to waste money on resources to eliminate barriers. I don’t need a wheelchair that can climb stairs. I just need architects and planners to consider that not everyone has the ability to climb stairs, and then develop inclusive plans and designs. I am more disabled by a society that does not consider and plan for my access needs than I am because I have a wheelchair that doesn’t climb stairs.

5. Just because we’re disabled doesn’t mean we know all the other disabled people!

Let’s go back to the scenario of a stranger telling me they know another wheelchair user. At least 50% of the time, once the stranger tells me they know another wheelchair user they then ask me if I know that person. Here’s the thing – I don’t know every other wheelchair user! Sure, I know LOTS of people. I have a large circle of support and am connected to others in the disability community. But, despite what my friends and coworkers may tell you, I don’t know everyone.

I could easily continue with this list, and maybe some of my readers will share there own experiences in the comments. For now, I’ll close with this advice.

Everyone wants and deserves to be treated with respect. While I do my best to assume good intent in the actions and words of others, the little digs add up over time and become tiresome. Next time you are uncertain of what to say or do, try a simple smile and “hello.” That always seems to work for me.

Redefining Disability Challenge – Question 23

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twenty third question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge.

Here is this week’s question:

What would you like the general public to know about your disabilities, disability in general, or any other relevant subject?

Earlier this week I had an online social media discussion about language and disability. The conversation revolved around the idea of person first language, or PFL (person with a disability, woman who has diabetes) versus identity first language, or IFL (disabled person, diabetic woman).

I have written other posts about my preferences regarding language, and you can read them here and here. I prefer journalists write or speak about me in the media using PLF. I am a woman with a disability, or a woman who uses a wheelchair. I use PFL myself – except for when I use ILF.

I use IFL when I am making a point about feeling disabled by society. When a business owner has prevented me from accessing a patio at the rear of the restaurant because she has not ramped the step, I am disabled by lack of access. When conference organizers invite me to speak but do not provide a means for me to access the stage or microphone, I am disabled by their lack of preparation and accommodation. When a Personal Assistant does not show up for her shift and I am unable to get to a bathroom at the time of my choosing, I am disabled by her lack of professionalism and respect.

I am disabled by others, not the neurological impairment which has been a part of my life since birth. Let me say that another way. The lack of muscular strength does not disable me. Other people, lack of access, or technology which does not work – these things disable me. I use IFL specifically when I feel excluded from full participation to make a statement of how others have made me disabled. I do not see myself as disabled until society or lack of access make me disabled.

My use of PFL in some instances and IFL in others does not mean I do not have pride in my identity as a member of the disability community. I DO have pride in my disability. I am proud to be a part of the largest minority, the only minority group anyone can join at any time. I think my hesitation with accepting others using IFL to describe me comes from the semantic meaning behind the words.

Because I live with a visible physical disability which requires me to use a wheelchair, my disability is often the first thing observed by strangers and those around me. It is a fact – humans notice differences. It is what we do.

Just because my disability is the first characteristic others see doesn’t mean it is the one I want to be remembered for. And it doesn’t mean my sole identity is as a chick in a chair. But for many people who live with visible disabilities, we are accustomed to being known or recognized for our differences. And at times we are subject to the assumptions made about us because of our visible disabilities.

People who don’t know me usually assume my neurological impairment makes me disabled, and feel pity for me because I use a wheelchair. The truth is, my wheelchair is a liberating, necessary piece of adaptive equipment which makes my neurological impairment less disabling. It is the lack of a functioning wheelchair which truly disables me.

This chair is just one part of who I am. Just as you don’t like always being seen as only one part of your identity (Sherri’s mom, or the IT guy, or the annoying person who parks across two parking spaces) I don’t want to only be seen as the token disabled person. See me as a person – a person with feelings, intelligence, and abilities – who just happens to use a wheelchair to get from point A to point B.

Don’t we all want to be seen as complete people? Doesn’t everyone want to be acknowledged for more than just one part of their identity? Just because we want to be seen for more than one component of our identity does not mean we turn our back on the pieces of ourselves. I am still a writer, a crocheter, an aunt, a daughter, a speech-language pathologist and a Rotarian.

And I am a proud member of the disability community, even if I prefer you use person first language when you write about me.

Unless you’re the idiot who parked illegally in the access aisle next to my van. Then I’m disabled by your ignorance, and I’m going to call the police to have your vehicle ticketed and/or towed.

Redefining Disability Challenge – Question 20

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twentieth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge.

Here is this week’s question:

Do you have preferred language when it comes to disability?

I have been waiting for the “language question.” As a speech-language pathologist, I recognize the importance of language. As a person with a disability, I am particularly sensitive to language used to describe me and others like me who live with disability. As you read this post today, please remember I am writing from my point of view and not on behalf of all people with disabilities. Language is important to many, and there is more to using respectful language than just being “politically correct.”

The language used to refer to disability varies around the world. Like many Americans, I favor person first language, or language which places the person before the disability (a person with a disability, not a disabled person; a child who is diagnosed with diabetes, not the diabetic child). Not every disability group prefers this language, so it is always best to ask an individual what language is preferred, and try your best to honor their preference.

I support person first language, particularly in the media, because of the definition of language itself. Language is a shared, symbolic code used to express a culture’s ideas, values and beliefs (thank you Dr. Mark Ylvisaker for drilling that into my head during your 8:00 AM Introduction to Language Disorders course!). If you follow that definition of language, then the language used when talking about disabilities is important in framing and reflecting how we perceive disability. I support person first language because I want to be seen as a capable person first, not a disabled person. If we consistently put the disability before the person when describing someone, what do we value or believe about them?

Webster’s Dictionary defines disabled as “incapacitated; unable to work.” I am not a disabled woman. My woman-hood works just fine. I am not a disabled person. My person-hood is intact. I am not incapacitated. I have full time employment, and I also work 49 hours each week managing my personal care team. I live in a country with laws such as the Americans with Disabilities Act which grant me equality and access, and I am able, not disabled.

Now, there are times when I refer to myself as a “disabled person” and usually these times occur when I am referencing the social model of disability which I wrote about in my response to the second question in this challenge seriesMost of what I wrote in that post can be applied to this challenge question regarding language since a person’s view of disability often influences the language he or she uses when talking about disability. If you missed that post, I encourage you to go read it now for a more thorough discussion of the social model of disability. I’ve taken some of it for use here.

I live in a culture which for decades (centuries?) has viewed disability through a medical model. The medical model of disability views disability as a health condition (usually a deficit or abnormality) which is dealt with by medical professionals. The “problem” of disability is one to be “fixed” or “cured.” A person is often described in terms of what they cannot do.

Did you notice all of the negative language in my description of the medical model? Often, viewing disability through a medical model results in pity for the person “afflicted with” or “suffering from” an impairment. If a person is not “normal” as defined by doctors or professionals, it is assumed their quality of life must be less than those without disability. People with disabilities are encouraged to “overcome” and must adjust to “mainstream” society because the disability is the person’s problem. Disability is negative, and a person’s experience is often described using the words or phrases I have put in parentheses.

The social model of disability contrasts to this view. The social model does not deny an impairment and the impact it has on a person. But disability is viewed as the result of interactions between a person living with impairments and the barriers they encounter in the social environment. In this model, it is society which needs to change to accommodate people living with impairment instead of the individual needing to accommodate to a society which does not grant them equal access. I don’t need to be able to climb steps – the business owner who wants my money must make their business accessible to me.

If people with disabilities are viewed with pity or as objects of charity (medical model) instead of individuals with rights who are able to make decisions for our own lives, able to give informed consent and be active members of society (social model), we will never be treated as equals. Language can influence how people with disabilities are viewed by society.

I am particularly attuned to the language others use to describe me. If I am repeatedly described in newspaper articles as “wheelchair bound” or “disabled” (even when I ask reporters to use person first language), how do you the reader perceive me? How should I feel if I overhear someone describe me as “an invalid?” Yes, there are people who still use that word. Say it both ways. Invalids are invalid.

My friends and family offered different words to describe me. Positive words, like “independent,” “intelligent,” “outgoing,” “articulate,” and “caring.” Capable words, like “talented,” “creative,” and “musical.” I know which language I prefer.

When I conduct presentations and trainings on disability etiquette, I often hear questions from participants who are fearful of offending someone or using insulting language. Language, like culture, is always changing and evolving. Many words which were widely used by previous generations are considered offensive and thankfully are not used today. I recognize this may not make it easy for someone who is not as involved in the disability movement.

If you are looking for some basic disability etiquette, United Spinal Association has a guide on their website. As a general rule, I think it is best to try to avoid language which has historically been, or is currently, used to marginalize or oppress people with disabilities. Try not to make assumptions. If you are going to ask a person with a disability about language (or anything else), always speak directly to the person and not to the person’s friend, assistant or interpreter.

And whatever you do, never, EVER say the “R word.”