It irritates me that I can’t even go to the mall without feeling like a truck has run over my legs afterwards.
You should look into getting a wheelchair for distance walking like that. I did and it changed my life.
That’s me and my little girl. Figured a good place to start out is just showing who needs help.
I’ve been a wheelchair user for almost a year now, but do not have a wheelchair-accessible apartment. This is painful as all hell, and is only getting worse, as my GP is on maternity leave for three more months, and her replacement refuses to prescribe pain meds for me. I don’t have a diagnosis yet; we know that all sorts of stuff is going wrong in my body, but we haven’t discovered how it connects yet.
That’s me on my heart monitor. My heart health is extremely unstable right now, but again, we haven’t found out why.
Unfortunately, what was at first just a painful living situation has now turned into an abusive one. I rent my apartment from my mother, who was extremely neglectful to me as a child (to the point that she is the reason I’m legally blind), and continues her manipulation and abuse to this day. Well, she just came into my home and announced that she’d be moving in. We’d planned to find handicap housing by June, but now I need that date moved up drastically, because I fear for my mental health otherwise, and how such personal deterioration will affect my daughter.
Unfortunately, handicap-accessible is not only hard to find in this area, but also extremely expensive. We cannot move very far, because my partner is under contract with his employer for two more years (and he is the sole breadwinner, as my physical health has deteriorated so much, and my daughter’s bio dad does not contribute to her care).
What I’m trying to say is, I’m desperate. I’m desperate as hell. We need at least $6000 to be able to move, and we are living paycheck to paycheck. I’m terrified of what will happen to me and my family if we can’t make this change as soon as possible.
So, I’m asking for help. Please, if you can afford even a few dollars to help us reach our goal of moving, I would be so grateful. If you click the title of this post, it should take you to a PayPal donation page. I’m tired of being in pain, and I’m tired of being manipulated by abusers. My daughter and I both deserve a better life.
If you are unable to donate, please consider reblogging to help us signal boost. Thank you so much. <3
Signal to the boostin’!
Most disabled people need doors opened for them (literal doors, you ableist assholes) so don’t hesitate to offer or lend a hand. We appreciate it.
That being said, you people have no depth presentation.
Public doors usually swing open to somewhere near a right angle and the door…
You say you wish you had a scooter. You say it looks like fun. And yes, it can be fun, zooming around campus at a grand 4.5 miles per hour, the wind in my hair, unencumbered by my legs. But after awhile, it stops being fun.
It stops being fun when a kid who’s texting and walking literally falls in your lap, nearly tipping your scooter, and doesn’t even have the decency to apologize before he walks away.
It stops being fun when it takes five to ten maneuvers just to get out of your dorm room. And if you don’t do it just right, if you’re even the slightest bit off, you have to start maneuvering all over again, and all the while you’re panicking, knowing your time to get to class is dwindling away.
It stops being fun when the wheelchair accessible desk is tucked in a corner, and every day you have to move it, and everyone looks away uncomfortably, pretending they don’t see you so they won’t have to offer to help you.
It stops being fun when you have to miss class because it snowed overnight, and the paths aren’t clear enough for your scooter to get through.
It stops being fun when you feel like there’s a constant, bright spotlight on your head that will never, ever go away. When you’ve been reduced to a nickname of “Wheels”, and not once, over nearly three years, has anyone ever bothered to ask you what your real name is. When professors know who you are before your wheels cross the threshold of the classroom, not because of any great feat you’ve done, but because you stick out like a sore thumb on campus. And you wish that just one time, you could blend in, be anonymous, just another one of the hundreds of students that attend classes every day. But you will never, ever get that right to anonymity, no matter how hard you beg, no matter how much you cry.
When you use a wheelchair, you lose your right to be an individual person. Your entire personality, the entire sum of experiences that makes you YOU, gets distilled down to one aspect of yourself - an important aspect, but only one aspect nonetheless. People don’t look at your face anymore, only your wheels. That’s why we all get mixed up with each other - because no one bothers to look at our faces. Having a (fairly visible) disability isn’t just something you can turn and off at will - that’s why the simulations are screwed up, because you can just hop out of the wheelchair when you’re done and go “Well, that was fun! Back to reality now!” This IS my reality, and it’s never, ever going away.
So go on. Keep thinking it’s fun. I won’t argue with you - that would be a waste of my already limited energy. But maybe someday, you’ll end up like me. Due to an accident or disease or just plain old age, you’ll use a chair. And when it’s no longer a game, you’ll see how “fun” it is. I hope you’ll look back and think about what you said to me. Hopefully, you’ll apologize for your ignorance. And maybe, wherever I am, I’ll hear you.
I am a wheelchair user, with a four-year-old autistic son and a nineteen-month-old baby. Naturally we wanted to sit together and, particularly as it’s the Paralympics, I assumed there would be adequate provision for this to happen. I was stunned to hear that there was no way that this could happen as there is a policy that wheelchair users can only be accompanied by one other person.
One of the things I notice when I am in my #wheelchair is that many adults have difficulty knowing exactly what to say or how to act with someone who is in a wheelchair. Sometimes I notice inadvertent, side-glances; people who don’t glance directly at me, but will furtively look at me and then look away, as though they’re afraid of being caught staring.
I think that it is important to note that while you may be curious, some good general tips are as follows.
Tip 1. If you are curious and want to look at my wheelchair, please openly look at me, as you would look at any other able-bodied adult, and make eye contact. This is much less hurtful to me than when people pretend to be looking at something else while sneaking side-glances at me and my wheelchair.
I think I know why they do this; it is an ingrained cultural concept that we should not stare at others who are different. However, doing that kind of thing makes me feel like I am some kind of bizarre person, and increases my feeling of isolation.
People often have a natural desire to look at a wheelchair. It’s ok. A wheelchair is something out of the ordinary. However, it is immensely more painful to me if you give me a couple of sidelong glances and then move on without ever saying hello or acknowledging me. You don’t have to talk to me, but please do nod or smile as you would do to a normal person. It restores my feeling of humanity and equality.
Tip 2. If you have questions, ask, in a polite and respectful manner. I am usually very happy to answer questions about my condition or why I am in a wheelchair. I know I make people curious, especially because I am young. Many people don’t understand my disease, lupus, and want to know why I am in a wheelchair, especially when I don’t have a visible cast or broken bone. Politely asking is not offensive; ignoring and staring covertly is.
Tip 3. If you have small children, and they ask you something like, “Mamma, why is that girl in a wheelchair?” The best way to respond is probably to say something like “I don’t know; let’s ask her.” I have heard parents hush children up with a “Stop it, that question isn’t appropriate,” or they may say, “We don’t ask people those sorts of things. It’s rude.” Children have a natural curiosity about the way the world functions. They want to know. And by allowing them to approach and talk to me, you are increasing their tolerance and acceptance for people with disabilities. Plus, the majority of people in wheelchairs are happy to interact with curious children. They ask the questions that the majority of adults are thinking, but are afraid to ask.
Tip 4. When talking to me, don’t feel you need to kneel down or get on my level to talk with me face to face. While I understand that some people do that, thinking that it allows them to better make eye contact with me, but on the whole, it comes across as condescending. I know I’m in a wheelchair and I know that you’re going to be looking down at me. Although I am 5’11” when I stand up, in the wheelchair, I’m very short. And that’s ok. Just talk to me as you’d talk to me if I stood up and was facing you. We’re still on the same conversational level even if you tower above me. At the same time, don’t hug a wheelchair user if you’re just meeting them for the same time, unless you would hug a casual acquaintance in the same situation; make sure to treat those in a wheelchair with the same respect for physical distance you’d treat those who were able bodied.
Tip 5. Offering help to a wheelchair user in obvious distress is ok. For example, yesterday my motorized wheelchair went slightly off the road and got stuck in a patch of mud; I couldn’t get it out of the mud without someone’s help. Sometimes people walk on by, and look sympathetic, but aren’t sure what to say for fear of offense. A kind, “can I help you?” or “Can I be of any assistance?” can sometimes be greatly appreciated. At the same time, if the wheelchair user says ‘no, I’m fine,” it’s best to respect his/her preference.
Tip 6. Not everyone in a wheelchair is paralyzed. But people usually assume that is why you would use one. Illness and frailty often make wheelchair use necessary, and it can be just as necessary as for those who cannot move their limbs at all. The reason I use a wheelchair is because of a neurocardiogenic syncopy issue, which is a miscommunication between my brain and my heart. I pass out when I stand for periods of time which can be as short as 30 seconds long. I know this is difficult to understand, but think of it in terms of computers: I blue-screen if I stand too long.
Tip 7. Dogs sometimes freak out when they see people in wheelchairs. Even normally well behaved dogs. This is due to the fact that dogs’ minds don’t work like our own; they don’t see a person sitting in a chair with wheels; they see a strange creature, half human, half wheelchair hybrid. So be prepared that your normally calm dog who’s not used to seeing wheelchairs may turn suddenly upset when they see a person using one. Steady, calm your dog, and rein them in. It’s not a training failure on your part; it’s natural dog behavior and a part of how they perceive the world. If your dog will regularly come into contact with people who are in wheelchairs (for example, a neighbor or relative) it would be wise to train them to get used to a wheelchair. They see the world differently than we do. My dog, Sirius, is fully trained to adjust to the wheelchair. I’ve attached a picture of him and me interacting while I use my motorized wheelchair.
If you have further questions about this, feel free to leave them in the comments- or reshare. I’m sure other folk who live and work in wheelchairs may have other feedback to add. The point I’m trying to express is etiquette; and these are the thoughts that often go through my mind when navigating stores, museums, or when I’m out in public.
BTW, I am not, and cannot be a spokesperson for all wheelchair users. We are all unique and we all have our own preferences, as do all individuals. These are some generalities, and some are specific to me, but some other people who use wheelchairs or who are disabled may feel differently. This is why it is important to ask each person how they feel and what they would prefer.
The reason I speak up with these tips is because I suspect a majority of them are across the board true for many disabled populations; we often get ignored rather than asked what we would like, because people are many times afraid to speak to us openly. Don’t be afraid of offense. Discussing disability increases understanding and tolerance.
And DO NOT touch my chair or lean on it without my permission UNLESS you are a close friend and know you can get away with it! If you accidentally bump my chair, I WILL FEEL IT, so please apologize!
“Get out of the freaking way or I will run your ass over.”
Welcome to Ableist Word Profile, a (probably intermittent) series in which staffers will profile various ableist words, talk about how they are used, and talk about how to stop using them. Ableism is not feminism, so it’s important to talk about how to eradicate ableist language from our vocabularies. This post is marked 101, which means that the comments section is open to 101 questions and discussion. Please note that this post contains ableist language used for the purpose of discussion and criticism; you can get an idea from the title of the kind of ableist language which is going to be included in the discussion, and if that type of language is upsetting or triggering for you, you may want to skip this post.
I considered making this entire post “People don’t like being told they’re wheelchair bound. Stop doing it. Try ‘wheelchair user’ instead. Thank you.”
Then I remembered how often that argument is rejected. [My favourite: But I don’tlike the terms that people with disabilities prefer, and I’m way more important!]
[I used to make really flippant comments about how no one is actually bound to their wheelchair, in order to make people think about what their words meant. Then I started reading reports of people being bound to their wheelchairs and, in extreme cases, left to die. Flippant comments are less funny after that.]
Shackling language like “wheelchair bound” is problematic because it leaves the average listener with the idea, again, that wheelchairs are a tragedy. You’re stuck in one, and it’s horrible, and you can’t do anything or go anywhere and it’s so very very sad, and isn’t their life such a tragedy. Just because of being bound to that wheelchair.
The thing is, a wheelchair is the exact opposite of a tragedy. As the blogger atAccessibility Net in New Zealand put it:
I then explain: I’m not wheelchair bound. I’m not tied to the wheelchair. To use the term “wheelchair bound” implies *limitations*. When in fact, the wheelchair is a tool of freedom. It’s without that wheelchair that I am seriously limited.
So each time I am told I am wheelchair bound, the implied message I get is “you’re in a wheelchair, you’re limited”. Yeah, I’m in a wheelchair, it gives me wings!
This certainly mirrors the experience Don had when getting his sexy sexy wheelchair of awesome. He went from not being able to get out of the house more than once a week, if that, to being able to not only go out several times a week, but doing it with only limited pain. The wheelchair opened up the possibility of our enjoying this strange, hilly city we moved to. [That’s us in the picture, after two days of handling the hills in historic downtown Lunenburg. Usually he uses an electric wheelchair, but we rented the manual for the trip. I vividly remember how exhausting getting up those hills were, which I think is obvious if you look at both our faces.]
Wheelchair user also reminds us who is (or should be) in charge of the chair. The person using the chair should be directing it, even if they’re not able to control it themselves. [This is a great post by Wheelchair Dancer about how to push a wheelchair. Learn it, live it, love it, folks.] When we talk about people who are using wheelchairs as though they have some agency, we’re reminding ourselves and others that they should have that agency.
Thirdly, wheelchair user is inclusive of people who are either full- or part-time wheelchair users. There are people who only have to use a wheelchair during high pain days, or in the winter, or after an accident, or for only six months, etc. “Wheelchair bound” always has an air of permanence to it, while wheelchair user can be both permanent or temporary, and using terms like full- or part- time wheelchair user reinforces the idea that folks who only use wheelchairs for certain activities aren’t faking a disability.
I hope this much longer version of my originally-planned post still gets at my basic argument: People don’t like being told they’re wheelchair bound. Stop doing it. Try ‘wheelchair user’ instead. Thank you.
This, glorious this. My scooter gave me so much freedom.