Yes, Sometimes I Use A Wheelchair Now and sometimes I use a cane. And sometimes it secretly looks like I'm not using a mobility device but in real life I'm wearing knee and ankle braces. My Facebook friends probably got that far because of me posting a Facebook status about how fantastic accessibility isn't at the University of Maryland, College Park or possibly from anecdotes of me terrorizing people using aforementioned mobility devices.
For what it's worth, they probably deserved it and I don't know what you really expected out of me.
But let's talk about something real quick:
"Oh my goodness gracious you are now in a wheelchair WHAT HAPPENED TO YOU & WHEN ARE YOU GOING TO GET BETTER?!!11!?" is both
A. a pretty terrible way of approaching the situation and
B. making a lot of assumptions that inspire me to come up with very creative ways to show you my displeasure, depending on how much I like you.
Unless you are very close to someone, you should not ask why they are using a mobility device because it is none of your goddamn business, thanks. If you are very close to me, you've spent somewhere between one and three years watching my mobility slowly go downhill and hearing my rants about doctors and their blood tests being useless and can I PLEASE go three weeks without having blood drawn already? You may be part of the group of people I text during medical emergencies, or maybe a part of the group of people who I send an FYI to afterwards. And regardless, you probably heard pretty quickly when we finally reached a diagnosis, and then another. You might have even been a part of the sounding board when I decided to move from using a cane to using a wheelchair [whether you knew it or not].
Which brings us to a pretty interesting state of affairs, really, because everyone who should know about my medical issues does.
So why write this post?
Because people keep asking me these questions.
So here are the answers.
But first you have to pinky-promise that you're not going to ask another disabled person what is wrong with them because now you know that when you do that, you're being a complete asshole because literally nobody ever owes you an explanation for their medical issue unless you are their attending medical professional.
¿Sabe? Bueno.
1. Uh but hang on it's Important for me to Know What Is Wrong With People [or] But I'm Just Concerned About You!
My therapist thinks that people meaning well should exempt them from being hit with any handy mobility device when they ask stupid questions. I disagree, but acknowledge that sometimes people mean well in the most frustrating way possible. Probably if this question applies to you, you do care - or at least have convinced yourself that you do. But in that case, the question you actually want to ask isn't what's wrong with me.
The question you want to ask is "can I do anything to help? Do you need any support right now?" And sometimes I will say yes and sometimes I will say no but I won't actually entertain any thoughts about bludgeoning you for asking either of those questions.
Not convinced? Let's move on then.
2. So what's wrong with you [or] what happened?
I have a connective tissue disorder that is probably related to a rare genetic condition, in addition to autonomous nervous system malfunctions and as yet undefined gastrointestinal issues, both of which are often comorbid with aforementioned connective tissue disorder.
Did that help you understand how I'm currently feeling? Or how I'm now navigating the world, literally or figuratively? In fact, did that give you any degree of understanding about how my life works without some quick Google-fu? Nah?
Yeah that's kind of my point.
See, there are some points where my medical condition is probably going to affect your life, but you don't actually care about the jargon. When things come up in relation to you, I will communicate them. Good example? I'm going to be facilitating a group at Hugh O’Brian Youth Leadership (HOBY) Maryland this year from my wheelchair. For obvious reasons, this has brought up some very serious discussions between myself, the Director of Facilitators, and my junior facilitator. For example:
Seriously though, you don't actually care what's wrong with me. You care what the functional implications to our relationship and/or your life are. So please don't act like you're entitled to anybody else's medical information. Trust the disabled person behind the curtain to actually convey things when they need to be conveyed. And if they don't? Address it with them. Don't use it as a bullshit excuse to get your nose up in other peoples' business.
3. When are you going to get better??
I'm not.
Like okay realistically speaking things work in phases and there are things that will make the things in my body function more efficiently [or, theoretically, how they're supposed to] but there isn't a cure. There isn't a handful of supplements I can take twice a day that magically prevent my hips dislocating or whatever. There are things that will improve my condition but there aren't things that will make anything that's wrong with me go away forever.
And that's not me being morbid. It's a thing. And it's okay. I'm okay with it.
4. Wait does that mean you're going to be in a wheelchair FOREVER?
Um well no. For example, I am currently sitting in a chair without wheels and sometimes [but only when nobody else is looking] I come out of my wheelchair and sleep in a bed. Yeah, that's right. Crazy stuff amiright?
I use my wheelchair when it improves my quality of life.
Yes, I said those words.
Using a wheelchair drastically improves my quality of life. It significantly decreases my daily pain levels. It makes it less likely that I'll pass out and hit my head, or that my hip will dislocate while I'm walking to class and make me fall down. My professors [for those of you who are unaware, I'm studying Russian at UMD and it's an extremely small department, so I've had all of my Russian professors at least once already] have all commented on how much healthier and energetic I've been since I started using the chair. Even taking into consideration a medication disaster that led me spending the first two weeks of school in and out of urgent care and the ER [yes, I'm fine now], I've been able to keep on top of my coursework for the first time in years despite also working two jobs and taking eighteen credits, none of which are taught in my native language.
I don't use my wheelchair all the time. I can still walk for short distances without the world ending and even for longer distances, sometimes a good set of braces and a cane will suffice. Some wheelchair users can do this. Some wheelchair users can't do this. It is exactly none of your business which type of wheelchair user I or anyone else is, because we are the best judge of what is best for us when it comes to using our mobility devices. We are people and we will communicate to you what we need when we need it.
5. Oh shit what politically correct words do I use for you now???
FIRSTLY if you think I'm personally concerned with being politically correct around me I'm kind of worried because clearly we haven't actually met and any interaction between us clearly involved something impersonating me because dear LORD, I run a Rocky Horror cast at UMD, what do you really think is going on here.
Secondly, that's actually a fair question and it's mostly just on here for reference.
words that make me cringe:
6. Wow this makes me feel very <disturbed, sad, upset, disappointed, etc>
I don't care.
If YOU are having feelings about MY mobility, that's fine I guess but keep it out of my space because I both don't care and find it extremely inappropriate. If you don't want the perks of having me in your life [for example, a complete lack of vague disclaimers!] because you are personally upset by the fact that I am disabled...
Well I'm actually personally disappointed in myself that some of you are still friends with me on Facebook actually because I tend to purge ableist morons with a virtual flamethrower. Please comment below and we can take care of that.
This is not to be confused with you having problems with my communication about my disability. That is both incredibly valid and something that needs to be addressed. If that is the problem let's talk and see what we can do about it.
I hope you learned something.
For what it's worth, they probably deserved it and I don't know what you really expected out of me.
But let's talk about something real quick:
"Oh my goodness gracious you are now in a wheelchair WHAT HAPPENED TO YOU & WHEN ARE YOU GOING TO GET BETTER?!!11!?" is both
A. a pretty terrible way of approaching the situation and
B. making a lot of assumptions that inspire me to come up with very creative ways to show you my displeasure, depending on how much I like you.
Unless you are very close to someone, you should not ask why they are using a mobility device because it is none of your goddamn business, thanks. If you are very close to me, you've spent somewhere between one and three years watching my mobility slowly go downhill and hearing my rants about doctors and their blood tests being useless and can I PLEASE go three weeks without having blood drawn already? You may be part of the group of people I text during medical emergencies, or maybe a part of the group of people who I send an FYI to afterwards. And regardless, you probably heard pretty quickly when we finally reached a diagnosis, and then another. You might have even been a part of the sounding board when I decided to move from using a cane to using a wheelchair [whether you knew it or not].
Which brings us to a pretty interesting state of affairs, really, because everyone who should know about my medical issues does.
So why write this post?
Because people keep asking me these questions.
So here are the answers.
But first you have to pinky-promise that you're not going to ask another disabled person what is wrong with them because now you know that when you do that, you're being a complete asshole because literally nobody ever owes you an explanation for their medical issue unless you are their attending medical professional.
¿Sabe? Bueno.
1. Uh but hang on it's Important for me to Know What Is Wrong With People [or] But I'm Just Concerned About You!
My therapist thinks that people meaning well should exempt them from being hit with any handy mobility device when they ask stupid questions. I disagree, but acknowledge that sometimes people mean well in the most frustrating way possible. Probably if this question applies to you, you do care - or at least have convinced yourself that you do. But in that case, the question you actually want to ask isn't what's wrong with me.
The question you want to ask is "can I do anything to help? Do you need any support right now?" And sometimes I will say yes and sometimes I will say no but I won't actually entertain any thoughts about bludgeoning you for asking either of those questions.
Not convinced? Let's move on then.
2. So what's wrong with you [or] what happened?
I have a connective tissue disorder that is probably related to a rare genetic condition, in addition to autonomous nervous system malfunctions and as yet undefined gastrointestinal issues, both of which are often comorbid with aforementioned connective tissue disorder.
Did that help you understand how I'm currently feeling? Or how I'm now navigating the world, literally or figuratively? In fact, did that give you any degree of understanding about how my life works without some quick Google-fu? Nah?
Yeah that's kind of my point.
See, there are some points where my medical condition is probably going to affect your life, but you don't actually care about the jargon. When things come up in relation to you, I will communicate them. Good example? I'm going to be facilitating a group at Hugh O’Brian Youth Leadership (HOBY) Maryland this year from my wheelchair. For obvious reasons, this has brought up some very serious discussions between myself, the Director of Facilitators, and my junior facilitator. For example:
- where is it best to situate our group in the main auditorium?
- how are we going to get me up that inappropriately steep hill between the main auditorium and dorms?
- what is the best way to rig a pulley system such that we can attach actual dragon wings to my wheelchair?
- what colors should the flames we paint on my wheelchair be? And what kind of paint should we use for maximum durability?
Seriously though, you don't actually care what's wrong with me. You care what the functional implications to our relationship and/or your life are. So please don't act like you're entitled to anybody else's medical information. Trust the disabled person behind the curtain to actually convey things when they need to be conveyed. And if they don't? Address it with them. Don't use it as a bullshit excuse to get your nose up in other peoples' business.
3. When are you going to get better??
I'm not.
Like okay realistically speaking things work in phases and there are things that will make the things in my body function more efficiently [or, theoretically, how they're supposed to] but there isn't a cure. There isn't a handful of supplements I can take twice a day that magically prevent my hips dislocating or whatever. There are things that will improve my condition but there aren't things that will make anything that's wrong with me go away forever.
And that's not me being morbid. It's a thing. And it's okay. I'm okay with it.
4. Wait does that mean you're going to be in a wheelchair FOREVER?
Um well no. For example, I am currently sitting in a chair without wheels and sometimes [but only when nobody else is looking] I come out of my wheelchair and sleep in a bed. Yeah, that's right. Crazy stuff amiright?
I use my wheelchair when it improves my quality of life.
Yes, I said those words.
Using a wheelchair drastically improves my quality of life. It significantly decreases my daily pain levels. It makes it less likely that I'll pass out and hit my head, or that my hip will dislocate while I'm walking to class and make me fall down. My professors [for those of you who are unaware, I'm studying Russian at UMD and it's an extremely small department, so I've had all of my Russian professors at least once already] have all commented on how much healthier and energetic I've been since I started using the chair. Even taking into consideration a medication disaster that led me spending the first two weeks of school in and out of urgent care and the ER [yes, I'm fine now], I've been able to keep on top of my coursework for the first time in years despite also working two jobs and taking eighteen credits, none of which are taught in my native language.
I don't use my wheelchair all the time. I can still walk for short distances without the world ending and even for longer distances, sometimes a good set of braces and a cane will suffice. Some wheelchair users can do this. Some wheelchair users can't do this. It is exactly none of your business which type of wheelchair user I or anyone else is, because we are the best judge of what is best for us when it comes to using our mobility devices. We are people and we will communicate to you what we need when we need it.
5. Oh shit what politically correct words do I use for you now???
FIRSTLY if you think I'm personally concerned with being politically correct around me I'm kind of worried because clearly we haven't actually met and any interaction between us clearly involved something impersonating me because dear LORD, I run a Rocky Horror cast at UMD, what do you really think is going on here.
Secondly, that's actually a fair question and it's mostly just on here for reference.
words that make me cringe:
- handicapped
- handicapable
- differently abled
- wheelchair user
- disabled
- person with disabilities
- disabled
- cripple [please do not use this for other people without clarifying with them that it is OK]
6. Wow this makes me feel very <disturbed, sad, upset, disappointed, etc>
I don't care.
If YOU are having feelings about MY mobility, that's fine I guess but keep it out of my space because I both don't care and find it extremely inappropriate. If you don't want the perks of having me in your life [for example, a complete lack of vague disclaimers!] because you are personally upset by the fact that I am disabled...
Well I'm actually personally disappointed in myself that some of you are still friends with me on Facebook actually because I tend to purge ableist morons with a virtual flamethrower. Please comment below and we can take care of that.
This is not to be confused with you having problems with my communication about my disability. That is both incredibly valid and something that needs to be addressed. If that is the problem let's talk and see what we can do about it.
I hope you learned something.
Pop Psyc Contributor Teressa Ferraro is a Senior at the University of Maryland in College Park, MD. She devotes must of her time to the Hugh O'Brian Youth Leadership program to help develop leadership in and empower high school students. Teressa is a fierce defender of justice and equality with a bend toward combating Ablism and demanding LGBTQ rights.