Category Archives: 101
Dear abled/non-disabled people without disabled parking placards who use disabled parking spaces anyway,
I don’t care if you want to use the space “because it’s so convenient.”
I don’t care if you only “need” to use the space “just for a minute.”
I especially don’t care if you back up your illegal use of said disabled parking space with some bizarre justification like, “But some people FAKE being disabled to get these permits, so what’s the difference?” or “Well, if a person in a car with a blue placard shows up, I’ll move” or “But there isn’t anyone disabled who needs to use the space here right now, so what’s the harm?”
The harm is that I or other disabled people are so often witnesses to your saying these things, and we are presumably expected to not react at all to your taking advantage of something that is not for you. I personally do not own a motor vehicle, so while I don’t need a disabled parking permit, I also don’t need your entitlement complex and your basically telling me — a person with disabilities — that some of the regulations intended to benefit me and people like me are rules that can be bent by you if it’s the most convenient option for you, an able(d) person.
Just don’t do it. It’s illegal and carries penalty of a possible fine for a reason.
This sort of legislation? Is not intended to benefit you, or be a convenient thing that you can take advantage of when you feel like it. Most of the world is already set up for you. These “convenient” parking spaces don’t have to be set up for your use, too.
Last night, The Learning Channel in the United States aired a special on JoAnne Fluke, a dancer from Kansas. Since I’m writing about this on FWD/Forward, I think you can guess that JoAnne Fluke is a disabled woman. Fluke has caudal regression syndrome, a congenital condition of the lower spine. She was given a prognosis of less than three days at birth, and at 34, she’s winning wheelchair dance competitions. She’s a highly competitive dancer and she’s also interested in promoting wheelchair dance and raising awareness about the disabled dance community, two topics highly relevant to my interests.
She was profiled by a number of news outlets in the publicity ramp up to the TV special, and it’s really…interesting to see how journalists choose to depict her. The TLC special is called ‘Dancer With Tiny Legs,’ and thus it comes as no surprise to see titles like ‘The Tiny Dancer: Despite Small Webbed Legs, Woman Dances, Dreams.’ I see this kind of narrative a lot when it comes to talking about disabled dancers; there’s shock and surprise that, gee willickers, they can, like, dance and stuff! And set goals and work to achieve them! It’s so…wait for it, it’s in the first paragraph of the article…
…this amazing woman who suffers from a rare birth defect has gone against all odds and become a competitive ballroom dancer — and an inspiration to all those that she meets.
Inspiring! Of course, the illustration the article chooses to use is not an action shot of Fluke dancing. Instead, she’s posing on a floor with her dance partner, with the angle of the shot emphasising her partner’s long legs.
What’s fascinating about this particular profile is that it includes a sentence that’s actually quite neutral:
But while most people let their childhood dreams slip away…
I like that the article makes a point of simply saying ‘most people.’ Not ‘people with disabilities.’ ‘Most people.’ Because, the truth is, yeah, most people do let their childhood dreams slip away because they lose interest in them as they grow older, or for a variety of other reasons. Most articles about people with disabilities doing ‘inspiring’ things stress that their disabilities should have precluded their chances at ‘realising their dreams.’ This article points out that disability has nothing to do with whether you achieve your dreams or not.
Alas, it goes downhill from here. She has an ‘amazing story.’ ‘Despite’ her disabilities, she has ‘managed to create an able-bodied life for herself,’ because, as we all know, the nondisabled life is the thing that all of us aspire to, right? We all want to be normal. She puts on makeup! She drives her own truck! Wow, she really is just like a normal person! Who knew people with disabilities could drive, right? And put on makeup!
Fortunately, Ronnie Koenig at AOL Health stops writing at this point and lets Fluke answer some interview questions. The questions all read like a pretty common array of supercrip and good cripple stereotypes; how are you so strong? How come you never seem bitter about your disabilities?
Fluke’s responses are kind of a mixed bag, for me as a reader. I like that she points out that actually she’s not ‘super optimistic’ about her disabilities all the time; she talks about having a pressure sore, for example, and finding that frustrating. But she also reiterates a bit of some old narratives about disability. She talks about how she could have had it worse, and she gets her strength from G-d, etc.
But she also stresses that her disabilities have nothing to do with her being a dancer. It’s not despite or because of, as she puts it: ‘I’ve been a dancer since I was two years old. It has nothing to do with having disability or not having a disability.’ She also points out that achieving goals is about identifying those goals, getting to know yourself, and then working towards those goals, sound advice for anyone, of any ability status. And she points out that her goals don’t stop with dancing and promoting wheelchair dance, that she’s interested in becoming a Paralympic athlete.
However I feel about her responses, I do like that this profile gave her an opportunity to speak for herself, instead of filtering information about her through a lens. I got to learn about how she personally feels about her disabilities. So many profiles of people with disabilities I read feature interviews with family and friends, with everyone talking about the subject of the profile. In this piece, the usual narrative was reversed, and the subject talked about herself, which is the way it should be.
I’m not stoked about some of the language used about her in the intro, along with the rather patronising nickname that gets reiterated through the article, but I’m glad Koenig chose to profile her by allowing her to profile herself, for the most part. This is a step in the right direction, although I would have loved to see more neutral interview questions that didn’t set her up as a Supercrip from the very start.
Every day, millions of people around the world glance at their fuel gauges, realise they are low, and pull into a fueling station to fill their tanks. Some of those millions of people are disabled, and thus, I wonder why it is that fueling stations are designed so inaccessibly when relatively simple design changes could be implemented to improve accessibility.
There have been a lot of great discussions in comments here about driving while disabled, as some people with disabilities drive and others do not, but I think we can all agree it’s rather hard to drive on an empty tank (or empty charge, as the case may be).
The fueling process here in the United States at a self service station generally requires that you pull up to a pump, get out of your vehicle, and access a control panel that is only reachable to a standing person. Then, you have to pull out the nozzle, choose a fuel mixture, usually with buttons that are also only accessible to standing people, and fuel up. I assume that the process is similar in many other regions of the world, but I may be mistaken.
Our station has disabled call buttons with the familiar blue wheelie symbol, with a brief note next to them explaining accessibility procedures that I read the other day while I was slaking my car’s eternal thirst for petrol.
According to the signage, fueling stations in the United States are required to help people with disabilities fuel their vehicles if customers are unable to do so independently. Customers must be charged the self service fuel price, not pay for full service, and the station is required to post signage providing information to disabled customers about how to get fueling assistance.
But. If there are no personnel on site, as often happens in the middle of the night, when stations basically run themselves, stations are not required to provide assistance. Likewise, ‘a service station or convenience store is not required to provide such service at any time that it is operating on a remote control basis with a single employee,’ according to the Americans With Disabilities Act guidelines for fuel station accessibility.
So, if you cannot fuel your car independently because of the way the equipment at the fueling station is designed, and you are not traveling with someone else, you are expected to rely on the kindness of the station for help. If there’s no employee at the station or the employee can’t provide assistance, you are supposed to…what, exactly? Hope that there is another customer there who can help you? If it’s the middle of the night, you’re supposed to…hand some random stranger your credit card to swipe it in the console you can’t reach?
As I see it, there are several concerns with fueling station design.
One is safety. I know that there are very strict guidelines about how stations can be built and arranged, designed to reduce the risk of fires, explosions, and other problems. For example, there are bollards next to the pumps to prevent people from hitting them as they are pulling up. Likewise, the vapor capture design on most fuel nozzles, which can make them challenging to use, is also required by law.
Another is customer friendliness. In most regions, people can choose from several fueling stations, so there need to be design features, as well as pricing decisions, that appeal to potential customers to encourage them to choose a specific station. People with disabilities are also customers, and designing accessible stations seems to me like a good business decision, in addition to, you know, being something that should be common sense.
Forcing people with disabilities to rely on other people in a situation like this is not really, to my mind, ‘accessibility.’ Like lots of other drivers, people with disabilities sometimes drive alone, sometimes drive late at night, and sometimes run out of fuel at inconvenient moments. Making it functionally impossible to fuel up when there are changes that could be implemented to allow people to fuel up independently is simply not acceptable. It’s also not really reasonable to demand that people like full time wheelchair users schedule their driving trips around fueling station convenience.
One simple change that could be made: Lowering the control console to a height accessible for a wheelchair or scooter user. To my knowledge, this would not conflict with fueling station safety needs. However, I am not a fueling station architect or an expert in the building code as it pertains to fueling stations, so I could be wrong.
Another change that might be a bit trickier to implement: Design fuel nozzles that are lighter and easier to use. This is more challenging because of the legal and safety requirements, but it seems like with some creativity and focused engineering, this should be possible. Most nozzles are already usable with one hand, which is a good start.
What are other accessibility issues you identify at fueling stations? How do you think they could/should be addressed?
- Ableist Word Profile is an ongoing FWD/Forward series in which we explore ableism and the way it manifests in language usage.
- Here’s what this series is about: Examining word origins, the way in which ableism is unconsciously reinforced, the power that language has.
- Here’s what this series is not about: Telling people which words they can use to define their own experiences, rejecting reclamatory word usage, telling people which words they can and cannot use.
- You don’t necessarily have to agree that a particular profiled word or phrase is ableist; we ask you to think about the way in which the language that we use is influenced, both historically and currently, by ableist thought.
- 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 that 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.
Special. Special needs. Special education. Special bus. Special treatment.
Disability euphemisms are sometimes very difficult to untangle, which is why I hesitated so long to write an Ableist Word Profile on ‘special’ even though a number of readers requested it. Euphemisms illustrate a world where good intentions and changing language norms collide, leaving some of us in an uneasy position on the sidelines. When I wrote ‘Needs Are Not Special,’ for example, some people resisted the personal opinion I laid out in the post.
And I think that resistance demonstrated some interesting conflicts in the way people think about disability as well as language. Some people find ‘special’ a safe and comfortable word, one that takes the scary disability out of the matter. Others find it patronising, cutesy, and dehumanising. Some people think it’s more friendly, making people with disabilities more approachable. Others think that it feels like an insult. Some people honestly don’t care.
Some people with disabilities really don’t like ‘special.’ Others actively identify with it and like it. And the same holds true with a lot of disability euphemisms. This makes the point about self identification above extremely important; our goal with this series in general is to think about the role of ableism in language, not to police self identification or reclamatory language use.
It is also to acknowledge and discuss the fact that the disability rights movement has been having conversations about language and disability terminology for decades, and that many nondisabled people are (perhaps willfully) unaware of these conversations. They come up with complex and tormented euphemisms to talk about disability instead of just asking a disabled person if there’s an appropriate term. Many nondisabled people are shocked that many people with disabilities, including myself, view ‘special’ as a rank insult that is horrifying to encounter. This word makes me so angry. So angry.
Thus, when I say ”special’ troubles me,’ I mean ‘please do not use this term to refer to me, because I find it personally insulting, and I have an identity, that identity is disabled, please respect my identity by using the word I self identify with to refer to me’ and I also mean ‘I would vastly prefer that you consider not using it as a default/general term, but use it for self identification if you identify with it, and to describe other people who self identify with it.’ And, in return, if I know that someone identifies as special needs or with any other term involving ‘special,’ I will refer to that person that way, because I believe that respecting self identification is a critical thing. However, I note that I don’t personally know anyone who identifies with this term; I see it being used by nondisabled friends and family, applied as a label by others and not claimed as a self identification.
I think that people, including earlier generations of disability rights activists, started using ‘special’ to talk about and frame disability from a place of kindness. With the goal of inclusion. To humanise disability and make it seem less frightening. Perhaps, even, to stress the need for accommodation. That was certainly the intent behind, for example, the Special Olympics. Yet, even as it was being used in this way, it was also being twisted and used in the opposite way, to insult people with disabilities. ‘Special’ became a double-edged sword: A respectful term for people with intellectual disabilities, for example, and an insult along the lines of ‘r#tarded.’ Accommodation, a basic human right, turned into ‘special treatment,’ a nuisance. A hassle. Something that isn’t really necessary.
Euphemisms are hard to talk about because of the dual nature of their use. Yes, all ableist language is used in many different ways, including coded ways, but euphemisms feel particularly tricky to me. Because I see them used as insults and as proud self identification. I see them used by people who are struggling to find the right words to say, and not wanting to cause offense. And, sometimes, their usage reflects cultural and political differences; English is spoken in a lot of countries and it’s used in a lot of ways, and a word or phrase that rings wrong to me is entirely polite and appropriate somewhere else, just as some people cannot stand the phrasing ‘people with disabilities’ that’s used here in the United States. When you enter translation between languages, things get even more entangled.
So, here’s what I, personally, don’t like about special: I feel like it’s an isolating word. I feel that the concept of ‘special’ stands in the way of full integration into society, and it also perpetuates some very harmful myths. It sets people with disabilities aside and stresses that they are different and alien. That using a wheelchair, for example, is ‘special’ and different and weird.
This word, to me, stresses a hierarchy of normality. And, thanks to the way that it has become twisted, it has become a singularly loaded word. Everything from ramps to quiet rooms for taking exams is considered ‘special treatment’ and sneered at. Nondisabled people think that we are pulling off some kind of giant scam here and that’s reinforced when we talk about, for example, ‘special education.’
The very idea that accommodations are ‘special’ stresses that they should not be expected. That they are a prize or treat. That you don’t deserve them. I want to see accommodations normalised. I want to see it assumed that everyone who wants to participate in something is able to do so, that no barriers are presented by other participants or the venue. I don’t want that to be ‘special.’ I want it to be ordinary.
Likewise, the idea of referring to human beings as ‘special’ is one I find troubling, not least because this term has become weaponised. I have trouble parsing whether it is being used as a celebration of identity or an insult whenever I encounter it.
What about you? Do you like or dislike ‘special’? What does this word evoke for you when you encounter it?
Note: This post was written primarily with nondisabled readers in mind.
Cure evangelism is a scourge which seems unlikely to vanish any time soon, so we may as well address it and have a little chat about what it is, why it is problematic, and what you, personally, can do about it. This is not just a problem which affects people with disabilities. Fat folks are often subjected to a form of cure evangelism from people who believe that fat is something which needs to be (and can be) cured, for example, and anyone who has ever experienced temporary disability or illness can probably think of a few examples of cure evangelism which they have experienced.
What is cure evangelism?
Put simply, cure evangelism involves aggressively pushing a medical treatment or approach to a medical condition or disability on someone, without that person’s consent, interest, or desire. It takes a lot of different forms; the pregnant woman who is informed that she must have a natural birth and that if she thinks positive enough, it will happen; the cancer patient who is informed that ‘this great herbal supplement’ worked really well for the evangelist’s friend; the asthma patient controlling asthma with acupuncture who is constantly told to start using inhalers; the person with mental illness who is shamed for not taking medications.
In all of these cases, the cure evangelist identifies that someone has a medical issue, the evangelist has an opinion on how to treat that medical issue, and ou feels entitled to share it. Cure evangelism comes from all kinds of people, including people who have shared that experience and people who have not shared that experience. It all boils down to ‘there’s only one way to handle this situation, and that’s my way.’
Cure evangelism presupposes, of course, that only one treatment for something would be appropriate or necessary. It presupposes that all bodies and issues are identical, which means that experiences can easily be overlaid on each other: ‘if I have asthma, everyone must have asthma like mine.’ At its core, it is about assuming that other people’s bodies belong to us, are subject to our control, and are our business. Indeed, that we have a moral obligation to interfere with what other people do with their bodies. To save them from themselves.
Why is it problematic?
I think that the problematic nature of cure evangelism is multifaceted. There are the issues of bodily autonomy which I covered in the above paragraph, which become especially complicated for women, trans* folks, people of colour, and people with disabilities. Members of all of these groups have historically been treated like property and in some cases are still considered property. And I’m not even talking about the metaphorical sense in this particular case.
When you have been exposed to a culture which regards you as a publicly tradeable commodity, exercising control and autonomy become especially paramount. Being able to make decisions for yourself and your own body without the approval or consent of others is part of taking control of yourself and your identity. Thus, when people in these groups are informed that they must do something, it comes from a very entrenched culture of ownership. The person speaking often has privilege, and is exercising that privilege thoughtlessly. Many people claim to be well meaning, say that they just want people to be informed, but this presupposes that people are not informed on their own and that, moreover, it is only possible to reach one informed choice.
Another facet of cure evangelism is that it is, quite frankly, annoying. People present these things as though they are new and different and no one has ever brought them up before when in fact nothing could be further from the truth. Every single time someone approaches me with a new act of cure evangelism, it’s always to tell me about something which I am already well aware of. In some cases, it might be something I am already doing. Or something which I did which did not work. Or something which I explored but decided was not for me.
When a cure evangelist is cornering me and telling me to do this or that, it puts me in a bad place. Rejection is taken as rude, so I can’t just get out of the conversation. I don’t really feel like discussing my body with other people, let alone how I take care of it, and I’m not really interested in saying ‘yes, I’m actually already doing that’ or discussing any aspect of my treatment plans with someone who is not part of my treatment. It’s a personal matter.
What you, personally, can do about it.
Don’t do it.
It’s that simple. If someone chooses to share the fact that ou is disabled, or sick, or temporarily injured with you, don’t evangelise. Now, if someone explicitly asks you for advice and suggestions, by all means, do so. But don’t do it in a pushy way. Make it clear that these are things you know from your own experience, but that mileage may vary.
When someone chooses to talk to you about ou treatment, listen. Don’t comment. Don’t judge. If that person is doing something which you disagree with, remember that it’s about ou body and ou choices. Imposing your values accomplishes nothing. If someone asks for your opinion, offer it. But, again, don’t be pushy about it. People are engaging in an act of faith and trust when they share that with you; don’t violate that.
If you feel that you have information which is simply critical, instead of volunteering it, say that you have information/advice and it’s available if that person is interested. If that person says no, respect that.
And when people are having conversations in their own community; as for example when people with disabilities are having an open thread about an issue which pertains to them, don’t butt in if you aren’t part of that community. Feel free to watch and take information away, but don’t add your two cents. The people in that conversation don’t want to hear about your relative/friend. They are talking about their experiences.
And, let me tell you, when a friend who shares a disability with me says ‘hey, guess what,’ I listen and pay attention, because it is offered respectfully and with love and from a place of shared experience. And sometimes I say things like ‘hey, I am thinking about changing medications, does anyone have experience with [medication]?’ and people who actually have experience talk to me, and I learn things, and it is good. These situations are not cure evangelism, though. They are about connecting in a place of shared experience and sharing mutually beneficial information.
It’s Blogging Against Disablism Day 2010, and I would highly recommend checking in at Diary of a Goldfish to see other posts on the theme!
A question that I get from a lot of nondisabled folks as they are starting to explore ableism and interacting with people with disabilities is ‘I really can’t stand it when someone appears to be in need of help, and I want to offer assistance, but I don’t know how. Can you tell me how to politely ask someone if help is needed or wanted?’ The desire to offer assistance is a natural one, but it often expresses in really offensive and sometimes dangerous ways (‘here, let me push your chair for you!’) so this is a question I don’t mind answering!
And I’m going to start my answer with an anecdote from my own life which I think illustrates a reasonably good example of how such interactions can go:
I was in line at the grocery store, and I noticed a wheelchair user behind me with a basket. I quickly observed that his chair was low and the conveyer belt was high, and it might be difficult for him to get his groceries up onto the belt, so I said:
‘Would you like assistance with that?’
And he said:
‘No, thanks, I kind of just shove the basket up there and let the checker deal with it.’
And I said:
And then we had a conversation about fruit.
Note that this interaction had several characteristics. I observed something which I thought might be an issue and offered assistance. I did not yank this gentleman’s basket out of his hands. I didn’t shout at him or talk very slowly as though I was afraid he wouldn’t understand me. I looked at his face, not his chair, while we were talking.
And when he said ‘no, thanks,’ I didn’t force the issue. I gracefully acknowledged his equally graceful decline of my offer, and we went on with our days. In other words, we had an interaction where we both treated each other like human beings, equally deserving of courtesy, respect, and autonomy.
When you want to offer assistance to someone, offer politely, and don’t swoop in as though you are assuming that your offer has already been accepted. Never touch a person’s body, service animal, or assistive device without permission. If that person says ‘no, thank you,’ say ‘ok.’ If that person says ‘yes, please,’ pay attention when that person explains how you can be of the most help.
Over at Jesse the K’s place, a great conversation took place recently in which we talked about the language people use when offering assistance, and what a difference it makes:
When someone says “Can I help you with that?” my negative response can be interpreted as “you’re not capable of helping me” (which many folks would perceive as rude). To me, that question is more about the asker’s need to help than my requirements for assistance. When someone says “would you like a hand with that?” saying “no” focuses on me, not the asker. (Jesse the K)
When framing offers of assistance, it is tremendously beneficial to phrase them in a way which centers the person who appears to need help, rather than the person offering it. Saying ‘Do you need assistance?’ or ‘Do you need a hand with that?’ sounds very different from ‘Can I help you?’ In addition to watching your literal language, it helps to watch your body language and tone; are you using a sing songy voice? Are you talking any differently from the way you would talk to anyone else? Are you staring at a physical impairment or assistive device while you talk?
The brief version of the answer to the question of ‘how can I offer help without being intrusive or offensive?’ is:
- Address the person, not the impairment, using language which centers that person.
- If the answer is ‘yes, please,’ pay attention so that you know how to help.
- If the answer is ‘no, thank you,’ say ‘ok,’ or something along those lines.
In respect for the spirit of Blogging Against Disablism Day, particularly the language amnesty, this is designated as a 101 thread. People with all levels of experience with disability activism and the disability community are encouraged to comment and exchange questions and ideas.
(Crossposted at this ain’t livin’.)