Special Post:

International Day of Persons with Disabilities

TLDR; In this special post, Sarah’s oldest kid writes about their experiences as a person with disability.

Hi, I’m Gemma and I’m a psychology major, an editor of this blog (sometimes), and a disabled person as well as a disability advocate. Today, I’m gonna talk about my experience as someone with a disability. Things I am gonna do in this post: explain how to talk to people with disabilities, educate you about disability from the perspective of someone with a disability, and hopefully help you understand more about the world of disability! Things I am not gonna do: call you ableist, make fun of/shame you for not knowing better in the past, or assume that you are ill-intentioned. It’s okay if you have a moment while reading this where you realize that you have messed up or been ableist in the past, we all make mistakes. What matters is that you learn from those mistakes and this post and do better moving forward. So, with all that to say, let’s dive into the first topic.

How to talk to people with disabilities: About disabilities and in general

Different people are more comfortable talking in depth about their disabilities than others, it can vary from person to person and you should not assume that every person with a disability is going to want to talk to you about their disability at all. For the most part, I abide by three rules:

1. Rule 1 is the HIPAA rule. The way the HIPAA rule works is that before you ask a question, consider if the person with a disability’s doctor was the one you were talking to. In the US, we have a law that ensures that medical information remains private – it’s called HIPAA. Would a doctor have to shut you down and not answer your question to avoid violating HIPAA? If the answer is yes, you shouldn’t be asking the question.
   
2. Rule 2 is that you should consider a few things, primarily, you need to ask yourself why you are asking the question. Is this immediately necessary for the person’s safety? Do you need to know this information because you are interviewing them on a study on accessibility? Are there stairs ahead in the path and you need to see if the person is comfortable climbing them? If you no longer think that your question is necessary for the current situation, stop. Do not ask the question. If you do think that your question is absolutely necessary for the situation you are in, congratulations, you can move on to rule 3
   
3. Rule number 3 is what I like to call the service animal rule. For those unfamiliar with service animals, there are only 2 rules someone is allowed to ask in determining if an animal is a service animal. They are a) Is that a service animal required because of a disability? and b) What work/tasks has the animal been trained to perform? I like to align any disability/ability-related questions with question b here, essentially, if there is an immediate safety/accessibility concern, I will ask if the person I am with is comfortable doing the thing that would be required of them. For example, if I am out walking with a classmate who uses a cane for stability when walking and we come to a fork in our path where one way is a ramp and one way is a short flight of stairs, I will ask “Are you comfortable climbing the stairs or would you rather take the ramp?” These kinds of questions are not intrusive and do not pry into someone’s personal medical history when immediately relevant and phrased in a way that isn’t inquiring about personal medical information. If they are not immediately relevant (for example, if we were walking on a fully ADA-accessible pathway and there were no stairs), it would be a prying and intrusive question that has no bearing on the situation. You gotta think a bit here – I wouldn’t ask the same question of someone in a motorized wheelchair, because the answer is obvious. While I try to be understanding of people’s curiosity, sometimes I just am not in the mood to explain myself and the many aspects of my disability, this goes for others with disabilities, too.

I also want to touch on tone a little bit here. Even as someone who is very open about my disability, if someone decides to ask me “What’s wrong with you?” that makes me far less likely to explain my disability to them, and even if I were still in the mood to explain myself, I would correct that person and explain there is nothing wrong with me, the question they were trying to ask is “Why do you use that cane?” Now, neither of these questions are questions I am required to answer, however, as someone with a disability who wants to educate people, I am far more likely to want to engage with someone who asks me about my disability respectfully and tactfully than someone who seems to view my disability as a defect of my humanity.

I also want to discuss eye contact. Be aware of what/who you are talking to. As someone who uses a cane sometimes, I can tell when you are staring at my cane. My eyes are definitely not down there. You can look at my cane if you happen to notice it, heck, you can even compliment it if the spirit moves you, but you are not having a conversation with my cane, you are having a conversation with me! I’ve heard this thinking echoed time and time again by other mobility aid users and the general consensus is to talk to the person with a disability. Now, you might be asking “Well, yeah, Gemma, that makes sense for an inanimate object like a cane or wheelchair, but what if the assistive tech in this situation is a person, like a sign language interpreter or someone pushing a wheelchair?” This is a very good question and one that can be solved in a fairly easy way: always make eye contact with/talk to the person with the disability – the person in the wheelchair or the one being interpreted. The person assisting is there to do their job, the same way the barista smiling at you is doing her job, they don’t just exist to hang out with you. However, if my friend who uses a wheelchair introduces their partner who is pushing their wheelchair and brings them into the conversation, I will start talking to them as well as my friend, however, this is a specific situation and doesn’t happen frequently. Generally speaking though, the support person is not a part of the conversation and you should focus on the person with the disability instead.

I am more than just my disability.

Like most people with disabilities, my disability is just one part of who I am. I am so many other things than just “person with a disability,” and while I understand that my disability can be the most visibly noteworthy thing about me, it shouldn’t be the only thing you notice about me. If you encounter someone with a disability and all you can do is see their disability, take a visual step back. Look at their outfit, or glasses, or hair, or piercings. See bits and pieces that eventually make up the whole. As much as I love disability advocacy, it is just one thing that I am interested in. I also love Star Wars, Grey’s Anatomy, and Arcane! I am a mosaic of interests and personality and my disability is just one tiny piece of that mosaic. This goes for everyone with a disability: nobody is just a “person with a disability.”

I also want to touch on the fact that my disability is not sad to me. One time at work, I noticed a lady struggling to carry some items, so I showed her to a bench where she could rearrange things and get more settled. At the time, I was using my cane, and joked to her about how I know a thing or two about having too much stuff and not enough hands to carry it as I gestured to my cane. Her face immediately changed into an expression similar to how you’d look at a wounded puppy. She started talking about how I’m “too young” and that it’s “just so unfortunate that you have to deal with all of that.” At that moment, I felt upset because she had just assumed that I must be unhappy with my life because I have a disability, which is certainly not true. I quickly shut her down and explained that it’s not unfortunate that I use a cane, I like my cane, it helps me get around and allows me to get through days when I’m not feeling 100%. And I do not view my disability as a negative part of myself, it is just one aspect of who I am. She seemed to come away from that conversation questioning her assumptions and, honestly? I hope she seriously reconsidered some things.

That brings me to my next point: I am not Tiny Tim from A Christmas Carol. People seem to have this idea that all people with disabilities are exceptionally sad they have disabilities. This is certainly not true of everyone. While I have several lifelong conditions that impact my day-to-day life and general well-being, nobody gets a say in whether or not I am happy in the state that I am other than me. Assuming that just because I have a disability I must cry all the time or wish for a miracle cure doesn’t help me at all. In fact, assuming that I must dislike having a disability only helps able-bodied people feel better about themselves for having pity on me. I am not sad because of my disability. Yes, there are ups and downs, and yes, there are days where I have been frustrated because I missed out on things I have wanted to do, but nobody gets to tell me that I only exist in a sad state. In fact, the people who assume that I am sad clearly don’t know me well enough, I find joy in so many parts of life, and assuming otherwise does nothing but tell me that you look down on me.

You never know what kind of day someone is having.

My disability changes a lot from day to day. I use a cane some days, some days I go for a long workout at the gym, some days I can’t get to class because I am too tired, some days I have to break out my cane after lunch, and some days are just average. If you encounter me for the first time on a day I’m using my cane, you wouldn’t be able to tell if that is my baseline or not. This goes for people with other disabilities too, some people are ambulatory wheelchair users that only use their wheelchair when they need it, you don’t know if they use a wheelchair all the time and you should treat them as such. Now, I’m not saying you should assume that every wheelchair user is gonna go for a run the next day, but don’t treat them like they can’t, either. Assumptions are bad in general, but for people with disabilities, they can lead to harmful stereotypes.

So, believe me when I say my disability is acting up – I know myself and my body more than you do. This is especially important for folks out there with chronic pain and migraine conditions. No two people with the same disability are guaranteed to think about their disability in the same way, it is a personal decision to seek treatment or alternative solutions. Some people with disabilities do not feel the need to be “fixed” and appreciate how they are. Not all disabilities are visible – this doesn’t make them any less real or valid. When you live with a disability, your life is impacted regardless of whether or not it’s obvious to others.

I hope this post helps you to better understand at least this one person with a disability (that’s me) and helps you the next time you interact with someone with a disability. I’m just a person.