Dear abled people who like to glare at people who use disabled parking spaces,
Hi there. It’s great that you’re so conscious that disabled parking spots are for disabled people! I’m pleased you’re so keen to keep disabled spots for disabled people – after all, that’s the law and the right thing. People who aren’t disabled certainly shouldn’t be using those spots.
However, you know what my problem with what you do is? My problem is when you take your anger out on people who are using those spots legitimately. I don’t know if you glare and shake your head and tut because you don’t notice the disability signs/stickers on the front of the car – or if you think they’re faking their disabilities – or if you think those crummy disabled people simply don’t deserve to hog the best parking spots. I don’t know if you do this because you don’t expect to encounter disabled people out and about, so you think the parking spot user isn’t legit. I don’t know why you’re letting dominant narratives crowd out the person there in front of you.
I’d also like you to keep in mind that some people who need disabled parking spaces are prevented from getting the sticker. The red tape involved can be incredibly difficult to negotiate, especially for someone running on the second shift for the sick. Some people who need stickers fall through the cracks formed by the “we need to tighten restrictions because of the tiny number of fakers!” meme.
Just keep in mind that, just as there are a lot of people out there who use disabled parking illegitimately, there are also a lot of people who make life harder for people who are using the parking legitimately.
Don’t be one of them.
Almost every time I read an article covering disability in some way or another, this noxious turn of phrase comes up. ‘The disabled’ say this and ‘the disabled’ do that and ‘the disabled’ feel this way about something. It’s a dehumanising way of referring to people with disabilities, as though we are a vague, collective mass that all think, behave, and act in the same way. It assumes that our experiences are shared and universal. ‘The disabled,’ you know, they are all alike.
This is not the first time this subject has come up here. Anna wrote about it in June.
This contributes to the de-humanization of disabled people. “The disabled” aren’t people, they’re a big collective noun who can’t be reasoned with, can’t be talked to, can’t be considered – they’re just to be placated, and dealt with, and put out of our minds as quickly as possible in case they sue us.
So did I, for that matter.
We are not a monolith. Or a collective noun. Nor are our disabilities the sum total of our identities.
Every time I encounter this phrasing, I am reminded that people think we are interchangeable, that we do not think and act independently, that we are just a kind of amorphous mass over there somewhere. You know. The disabled. I need look no further than the comments section of this very site to know that people with disabilities do not, in fact, agree with each other on everything. That we do not, in fact, have the same lived experiences. Nor do we conceive of disability in the same way, have the same ideas about how to address issues we deal with in our daily lives. I, for example, cannot be interchanged with commenter Astrid. Astrid and I even share some disabilities! But we are not members of the Borg.
People treat us like we are. It is assumed that accommodations are one size fits all, for example, which has real world consequences for people who need accommodations. Writing off an entire group of people with a collective noun is a neat way to shove them in a box and not think about them, and when that collective noun is in widespread and acceptable use (a number of journalism style guides approve ‘the disabled’), society internalises the attitudes that go along with it.
The media seems to have learned that it’s not ok to say ‘the women’ or ‘the gays,’ referring to an entire group of people with a collective noun, like they are a flock of sheep. It has been suggested that this is not very helpful, that it tends to strip people of their humanity. Yet, the same has not been extended to people with disabilities. We are still ‘the disabled,’ viewed as a generic collective, in most media outlets. Exact phrasing varies from journalist to journalist and some are better about it than others, clearly making a conscious choice to humanise us by using a more appropriate phrasing when referring to members of the disabled community.
‘The disabled’ is not just a problem because it’s a reminder that people think we are all the same. It is also a reduction of our identities to our disabilities. And people feel free saying it about individual disabilities, too. ‘The bipolar.’ ‘The borderline.’ ‘The paraplegic.’ And so on. This framing reminds us that this is all we are; that our identities consist wholly of a single noun. You can aspire to nothing in life because you’re ‘the disabled.’
Asking people to say ‘person with…’ or ‘disabled person’ sounds nitpicky. It sounds fussy. We get challenged on it all the time. But it’s not unreasonable. It’s a request that people consider the fact that a huge percentage of the population is disabled, and there’s no way that, say, 20% of the people in the United States think, behave, and feel in exactly the same way. We are all individuals. We are all different.
We are not ‘the disabled.’]]>
1. Ableism has a dictionary definition.
The Oxford English Dictionary traces the world ableism back to 1981; likely the word was in use amongst activists before then.
[< ABLE adj. + -ISM suffix, after RACISM n., SEXISM n.2, etc. Compare ABLEIST adj., and also earlier ABLED adj. 2, ABLED n.]
Discrimination in favour of able-bodied people; prejudice against or disregard of the needs of disabled people.
1981 Off our Backs May 39/1 ‘Ableism’that is, the systemic oppression of a group of people because of what they can or can not do with their bodies or mindsis the result of..ignorance. 1993 R. HUGHES Culture of Complaint iii. 162 But certainly clause (3) made it clear that he was against racism, sexism, ableism, lookism and any of the other offences against social etiquette whose proscription by PC was already causing such mirth and laughter among the neo-conservatives. 1994 Canad. Woman Stud. Fall 92/2 Just as there is racism in the feminist movement, there is also ‘ablism’. Able-bodied women have not fully accepted women with disabilities. 2006 C. OYLER & B. HAMRE in C. Oyler Learning to teach Inclusively viii. 145 Although racism and sexism..are recognized as serious challenges to fairness, equity, and democracy,..ableism is often not even acknowledged.
It defines ableist as “Characterized by or exhibiting ableism.”
I mention the dictionary definition because people often claim that ableism is a made-up word that internet activists created just to annoy them, as opposed to a word with history that people with disabilities ihave been using to define their experiences for at least 30 years.
2. Ableism can be deliberate.
A. The Canadian Government went to court so they could continue to make their web content inaccessible to screen readers.
B. Clint Eastwood argued vehemently that 10 years was far too short a period of time to expect that businesses would follow the Americans with Disabilities Act (ADA) and painted himself as a little guy fighting back against the “sleazy lawyers” preying on “the disabled”, rather than as someone who had been breaking the law for 10 years and was now choosing to fight for his right in court to continue to do so. John Stossel argued earlier this year that the ADA might require businesses to be accessible, and this was unacceptable 20 years after the ADA had been passed. [Content warning: John Stossel]
C. Where’s the Benefit has spent the last few months detailing out how cuts in spending will affect people with disabilities. It’s hard to pick just a few examples. How about the Member of Parliament who declared that anyone who was on Twitter too much wasn’t really disabled. Or what Disability Living Allowance (DLA) actually does being misrepresented by both the government and the press?
D. Dave Hingsburger: Service Interupted:
‘Purposeful exclusion,’ I said, ‘there is no way anyone could design this, approve this and build this, without knowing that people with disabilities will never be able to use it. That makes it purposeful. The fact that only certain people can now use it make it exclusion.’
‘I’m sorry,’ she said but I interrupted.
‘This is bigotry in concrete, this is prejudice made of steel and glass, this is how builders and designers and hotel managers spit in the face of those with disabilities. They knew, they didn’t care, they did it anyways.’
E. Politicians across Canada, who make 30 second advertisements that are carefully scripted to make the best impact, don’t use the subtitling option when they upload those same 30-second scripted videos to YouTube. But I guess some politicians are okay with their videos looking like this (image description below):
Image description: Michael Ignatieff (older white dude in a sensible blue shirt and tie, his hair a bit windblown) with the caption “Don’t let anybody into Medicare”.
Actual quote: “Don’t let anybody intimidate you”.
3. Ableism has an academic definition.
Here’s a good example:
Ableism is a form of discrimination or prejudice against individuals with physical, mental, or developmental disabilities that is characterized by the belief that these individuals need to be fixed or cannot function as full members of society (Castañeda & Peters, 2000). As a result of these assumptions, individuals with disabilities are commonly viewed as being abnormal rather than as members of a distinct minority community (Olkin & Pledger, 2003; Reid & Knight, 2006). Because disability status has been viewed as a defect rather than a dimension of difference, disability has not been widely recognized as a multicultural concern by the general public as well as by counselor educators and practitioners.
Laura Smith, Pamela F. Foley, and Michael P. Chaney, “Addressing Classism, Ableism, and Heterosexism in Counselor Education”, Journal of Counseling & Development, Summer 2008, Volume 86, pp 303-309.
You can also get a degree in Disability Studies. There is a Disability History Association. There are several academic list-serves dedicated to discussion disability. You can go to disability-studies focused conferences. You can go to Deaf-studies focused conferences. You can get a degree in Deaf Studies. You can read a wide variety of academic books that discuss the history of ableism.
Or you could read people talking about their lives on their blogs. There are a lot of blogs where people talk about experiencing ableism.
4. Ableism can be accidental. This doesn’t make it okay.
A. I don’t think Google woke up one morning and decided to make some of their products completely inaccessible to certain users. I know they managed to pull it off anyway.
B. I don’t the mainstream media woke up one morning en masse and decided to ignore protests in support of the Community Choice Act. I know they managed to do it anyway. More than once.
C. I don’t think Canada’s Minister responsible for Disability-related issues deliberately sought out a wheelchair-inaccessible space for her constituency office. I do think continuing to have it 7 months after this was pointed out to her in Parliament is deliberate, though.
5. Ableism kills.
Record of the Dead: October 2010
Record of the Dead: September 2010
Betty Anne Gagnon and Murder Most Foul
Quick Hit: Parents of Disabled Children
Tracy Latimer is dead because her father is a murderer
Here’s what affirmative action is: A policy and programme adopted in many regions of the world to encourage employers and educational institutions to consider the history of discrimination against certain classes of people when it comes to admission and hiring decisions. Such policies usually cover women, people of color/nonwhite people, and people with disabilities. The goal of affirmative action is to counteract the effects of centuries of discrimination to create more opportunities for oppressed groups of people by not shutting them out of education and employment opportunities, acknowledging that prejudices are often deeply internalised and people can’t overcome them by sheer force of will. (And are often not aware of how deep they run.)
Here’s what it isn’t: A demand to always hire/admit the marginalised person, no matter what. Yet, it’s often framed that way, as seen in the ‘reverse discrimination’ slang. Everyone, it seems, has a sob story about how ‘someone they know’ didn’t get a job because there was a less qualified Black woman or disabled man or someone else who was there to swoop in and take the employment opportunity away, riding smugly on a cloud of affirmative action1. I have had dyed in the wool liberals informing me with clear, innocent faces that their white, middle class, nondisabled, heterosexual, cis friends and relatives have been horribly oppressed by being passed over in favour of ‘underqualified’ marginalised people who just happened to compete for the same jobs/places at school. They inform me that this is unfair and awful and should stop immediately because it’s wrong.
Here’s what affirmative action is about: When you have, say, an employer who is considering a group of job applicants, that employer is asked to consider the applicants equally. Not to, for example, throw out an application from a woman who uses a wheelchair for mobility because it will be ‘too hard’ to accommodate her. To give everyone reasonably qualified a chance to interview and to honestly and fairly evaluate applicants for a job, rather than deciding that someone is automatically unfit on the basis of personal characteristics. And, yes, if you have two equally qualified candidates, one of whom happens to be a member of a dominant group and one of whom does not, to consider preferentially hiring the person who has not benefited from discriminatory practices throughout life. No affirmative action policy demands that people hire the less qualified people, deciding whom to hire solely on the basis of who is the most oppressed.
People talk about ‘quotas’ and they talk about how businesses and educational institutions ‘get in trouble’ if they don’t have enough ‘token minorities’ and they miss the point entirely. I see this depicted everywhere from pop culture (Cuddy yelling at House for not having a female physician on this diagnostic team) to casual interactions with people who inform me that they ‘would’ apply for a job somewhere but ‘some Latina will probably snag it from me anyway because they’re worried about not having enough brown faces behind the front desk so what’s the point.’ Actual cases where businesses and schools have been punished for failing to adhere to affirmative action policies haven’t involved a government auditor checking to see how many marginalised people they have, but documented discrimination against marginalised groups in interview and admissions policies.
Do affirmative action programmes in colleges and universities ask for more leeway on things like test scores? Yes, they absolutely do, and there’s a reason for that: People in oppressed classes are less likely to do well on standardized tests, for a whole lot of reasons ranging from unequal access to educational opportunities to biases built in on the tests themselves. This means that, yes, when an applicant identifies as poor, for example, that the school will weigh that in the student’s application and will consider the impact that poverty might have on test scores and academic performance. The school won’t say ‘oh, we should let a clearly unprepared student in because she’s from a lower class background,’ but the school will say ‘this student clearly has potential, even if she’s not there yet, so let’s give her a chance, given that she’s had an uphill slog to get to the point where she can even apply for college.’
What this asks people to do is to consider the historic role of discrimination in access to everything from education to employment, to recognise that because of the widespread and deep biases in society, some people can’t access the qualifications/experience that others can. And, yes, affirmative action does ask people to consider marginalised people preferentially, in the hopes of balancing out internalised biases and attitudes; trust me, people, in terms of how people actually behave, it’s a wash.
People say this is ‘unequal treatment’ and that ‘if you want to be treated like everyone else, you need to be held to the same standard.’ What they miss is that the standard is inherently discriminatory and biased. Holding everyone to the same standard is effectively an act of discrimination, because it demands that people fit into a mold they can never fit into, reach goals they can never attain, because the deck is stacked against them from the start.
It’s an attempt to compensate for privilege to say that the lived experiences of applicants should be considered to contextualise their applications. Not an act of discrimination. A corrective measure, an attempt to address and rectify an entrenched culture of prejudice by creating more chances for people who have historically been denied those chances, is not ‘reverse discrimination.’ And I’d like to humbly suggest that people retire that particular slang term, post haste.
But I’d like to spend a little time drilling down into some specific aspects of disability and living with disability that tie in with feminism, very strongly, because I continue to encounter pushback when it comes to integrating disability into conversations about feminism.
Today: Gendering when it comes to access to health care and disability services. Gender inequality is a core issue in feminism and it can be seen especially clearly when it comes to disability issues, which is one reason I’m always surprised to see that people don’t consider disability a feminist issue. I’m not talking here about the gendering of disability itself, which also occurs and is a separate issue that really needs its own post to do it justice. I’m discussing gendering when it comes to who can access health care and what kind of health care people can access, and how that plays out for people with disabilities.
Let’s start with the fact that, in the United States, to access health care, you need money. You need money to pay out of pocket, or you need money to buy insurance, or you need the kind of job that includes insurance as a benefit (we’ll talk about who can access government assistance, including health care, in a moment). Guess who is likely to have less money? Women. Women of colour and nonwhite women in particular are on the bottom of a pretty incredible income disparity as a result of intersecting oppressions. When women get sick, when they are injured, when they acquire disabilities, they are less likely to be able to access treatment because they cannot afford it, they are less likely to be able to adhere to treatment because over the long term it is expensive, and they are more likely to experience complications because of issues like caring for children, trying to deal with poor access to food, and other things while also trying to get better.
Outside the United States, money can still be a profound determiner when it comes to accessing health care, because money is tied in with so many things. People with money are more likely to have pursued advanced education, to be informed about health issues, including the early warning signs of conditions in need of treatment. People with money can access care the government doesn’t cover, can afford private hospitalization, can pursue treatments that cost a lot of money, and can persist through a health crisis when it comes to demanding and getting treatment. People with money can afford that supplemental private insurance that may make the difference between being turfed off in a corner somewhere and given actual treatment. Money talks, worldwide, and women are less likely to have it, less likely to hold it, less able to earn it.
But, but, poor women can go on government assistance! Then they don’t need money to pay for health care, so everything is ok. Yeah, except, the income standards for government assistance are hopelessly skewed and hopelessly wrong. Women have to be not just poor, but really poor to quality for government assistance, and they have to stay poor. Disabled women who apply for government benefits must be willing and able to jump through a number of hoops on command; they need to pull together reams of supporting documentation, to prove they are disabled enough, and guess what the government really doesn’t like paying out benefits on? Conditions like Chronic Fatigue Syndrome and fibromyalgia, which disproportionately impact women and are often dismissed as ‘not real disabilities,’ so even after doing everything right, these women might still be denied benefits.
For women who can get on disability, it’s a lifetime of poverty. The government has very strict limits about income and assets for people receiving benefits, which means that disabled women can only work very limited hours, can’t save money, and certainly can’t own any meaningful assets. ‘But they don’t need to, they’re on benefits.’ Well, poverty tends to intersect rather dramatically with a lot of feminist issues; how do you escape an abusive partner or caregiver when you have no money in savings and you can’t afford a hotel, a deposit on a new place, bus fare out of town? How can you plan for your future when you can’t save any money? How can you pay for treatment the government doesn’t cover when you have no funds? How do you buy the meds everyone says you have to take to be a ‘contributing member of society’ when they cost hundreds of dollars every month and the government delays your benefits for mysterious reasons all its own?
Accessing health care also requires time. You need the time to sit on the phone to make appointments. You need time to go to the doctor’s office for evaluation, time to go to the pharmacy to pick up prescriptions, time to perform prescribed exercises at home, time to argue with insurance companies about benefits. Time is something women tend to lack access to because they’re often juggling a myriad of tasks. Or they’re working in the kinds of jobs where asking for time off to get medical care is frowned upon. Or they’re working multiple jobs to afford to stay alive and can’t figure out where to fit a doctor visit into their schedule. Or they have young children whom they can’t leave alone, but can’t take to the doctor, either.
And let’s talk about the fact that a number of health conditions are underdiagnosed or diagnosed too late in women as a result of gendered ideas about who gets what. Heart attacks, for example. Are often not diagnosed in women both because they are believed to be a ‘male’ health complaint, and because heart attacks in women present differently than they do in men. This means that women are more likely to experience complications from heart attacks, if they survive, because they weren’t identified early enough.
Drilling down, we can see that certain classes of people wait longer for treatment and are often provided with inadequate care when they do receive it. Often, women are among these groups; for instance, women of colour/nonwhite women and poor women tend to experience delays in accessing breast cancer treatment. It’s notable that breast cancer is a very popular social cause, yet there are still significant disparities in terms of who can access diagnosis, treatment, and support for breast cancer.
This is a feminist issue. Women are dying, right now, all over the world, because they can’t get the care they need, and when they access care, they are treated unequally. For women with disabilities, the gendering of health care access creates a lifetime of barriers that don’t need to be there, from being told you ‘aren’t really’ disabled to being denied care on the grounds that the problem you’re having ‘doesn’t happen to women so it must not be happening.’ Gender disparities in health care access and treatment have very real and meaningful consequences for women who are sick, as well as disabled women. They can literally be the difference between life and death.
Tell me that’s not a feminist issue. Go on.]]>
Here’s the thing: If I were to obsess over my pain in the way that “obsessing” is traditionally defined, I would never get a damn thing done. This is why keeping track of my pain levels each day is so important — so I don’t have to obsess over it. It takes five minutes tops to jot down some notes at some point during the day; if that fairly small action equals “obsessing,” I shudder to think what the alternative might be.
I have a pretty full schedule. I go to school full-time (I’m getting my M.A.), and commuting to school via public transit tends to take a lot out of me even though I live somewhat close to campus; this is to say nothing of actually going to class, participating and being fully present in discussion and activities, and getting work and research done outside of class. And then there’s all of the stuff that’s not school-related: spending time with my partner and with family and friends, taking care of my dog, meal preparation, living space upkeep, creative work and hobbies, and other everyday things that are too mundane to list here. All in all, many of these things are par for the course in “mainstream” life. The ability to do all of these things and more in a given day, however, is something that many abled people seem to take for granted. Given my pain issues and the fatigue that comes with them, I have had to make quite a few adjustments as to what I can do and how and when these things get done. Often, I have to make trade-offs when it comes to what gets done or what I can do; depending on my pain levels on any given day, I might have to scale back on what I can do. There are days, too, when I can’t do much at all.
And yet, when some of us do have to keep track of our pain levels, make trade-offs when it comes to getting things done, give ourselves space to recoup, take a day (or a few) off, or acknowledge that, hey, maybe “getting everything (and more!) done” in the ways that most “normal” people are expected to is unrealistic and may actively make our conditions worse, abled culture (and many abled people) shows up to tell us that we’re Doing It Wrong, that we should be doing more, or that we should be spending our already-limited energy on other or “more important” things. You’re not doing enough, quit being lazy. If you really wanted to, you could be involved in real activism/you could get a real job/you could just suck it up and stop bothering everyone by talking about your pain. Ignore your pain and maybe it will go away. Your pain can’t be that bad! By adjusting your life to your health condition, you are letting the pain win. Positive thinking! Willpower! Bootstraps!
I have to wonder why some of the adjustments that I’ve had to make, such as keeping track of my pain levels, and then carefully planning what gets done according to how I am feeling, seems so incredibly threatening to some folks. Perhaps it’s that they want to explain away why they themselves do not have these problems and will (they think) never have to deal with illness, pain or disability firsthand, because they’ve lived their lives “right.” Maybe it’s because people living their lives in ways different than themselves is scary and weird. It could be because many people simply cannot conceptualize living with chronic illness or pain, and so they have to make people who do into an “Other” whose decidedly non-mainstream existences, life experiences and habits cannot be understood, or even given consideration, by those in the mainstream.
While small things like keeping track of pain and fatigue levels may seem incomprehensible or weird to people who are not disabled, these adjustments are very important for some of us. To an outside observer, the five minutes a day that I spend noting my pain levels — and my planning of my day depending on my pain and fatigue levels (what a concept, right?) — may seem totally alien, and like it does nothing to combat the stereotype of people with fibro as a bunch of hysterical middle-class women who are obsessed with their physical pain (hello, sexism!). For me, it’s a survival technique, however small and “alien” to people who don’t live with chronic pain or health issues.]]>
This is, as we know, not true. Not even for wheelchair users; a ramp is only the beginning of accessibility and it’s useless if, for example, all the doorways in a space are too narrow to allow a chair to pass. It’s not helpful if the front entrance is ramped, but as soon as you get inside, there are steps up or down to another area of a building. Or if the bathroom in a space is too small and cramped to use safely. Or if, hey, someone decided to put all the light switches ridiculously high up on the wall.
The universal symbol of accessibility is our old friend wheelie blue:
This symbol reinforces the idea that accessibility is primarily about wheelchairs. Now, granted, it would be functionally impossible to come up with a symbol representing all disabilities and all accommodation needs. The goal with symbols like this is to keep them simple, clear, and communicative.
But contrast that with this:
This icon shows the familiar wheelchair user, but also hands Signing, representing the d/Deaf community. And Braille. And a brain, which to my mind (ha ha) reads as a representation of neuroatypicality, for people with intellectual disabilities, for people with mental illness. Suddenly, the concept of accessibility is widened and the concept of different bodies and minds is represented here, reminding the viewer that accessibility goes beyond the ramp.
Wiscon’s accessibility policy is something we often point to here as an illustration of expanding the definition of ‘access’ and trying to work with people with many different kinds of disabilities to make a space comfortable and welcoming for them. It addresses issues ranging from wheelchair-accessible hotel rooms to the need for a quiet space to allergies. It also expands the conversation to talk not just about how spaces can be made accessible, but how people in those spaces can contribute to accessibility:
Offer help–don’t assume it’s needed. Most of us are taught to “help the handicapped” but not “does this person want or need help?” If you think someone needs assistance, just ask. If they say yes, don’t make assumptions; instead listen to the details of what the person with disabilities wants. If they say “no thanks” don’t be offended. What might look overly complicated or inefficient can be what that disabled person finds works best.
Wiscon also thinks about how the programming, the structure of the event, can be adjusted to create accommodations. Making more space between panels, for example, and providing information to attendees about which rooms have florescent lighting. Three facets of accessibility are being considered here: The physicalities of the space, the people in it, and how the programming inside that space is organized. That goes far beyond the way most people conceptualise ‘accessibility.’
Getting people to expand their minds when it comes to accessibility is more complicated than just getting them to think about the fact that there are issues beyond wheelchair accessibility. It also requires people to think about, discuss, and acknowledge conflicting accommodations and how to balance the needs of multiple people with disabilities. Some accommodations automatically exclude people from spaces. Conversations about conflicting accommodations are uncomfortable because we want to make spaces welcome to everyone, but sometimes there’s a fundamental conflict; take, for example, people who need to use essential oils to manage their conditions, and people who can’t be around strong odors or alcohol-based compounds.
Wiscon’s policy includes a statement and discussion about conflicting accommodations, something rather unusual. I haven’t encountered many discussions about conflicting accommodations in the mainstream, although one place I do spot them is online, where some sites have options like switching between a light on dark/dark on light theme or have other configurable options designed to address various disabilities.
Making spaces accessible requires thinking about a lot of things; about how people with a variety of disabilities will interact with a space, about how people will interact with each other in that space, and, often, how to manage accessibility with limited budget options. Many people trying to design accessible spaces may also not really know how to go about it, and they’re not sure about who to turn to. As a result, we end up with situations where spaces are not accessible because no one bothered to ask for input, instead trying to anticipate needs and failing. Often, the burden falls on people with disabilities to demand access and to provide education about how to make spaces accessible, even when that information is already available, with a little bit of searching.
Accommodation should also be provided automatically, without needing to be something that people specifically have to request and ask for. And people need to be provided with information about available accommodations, as this story Anna linked me to recently points out:
One barrier PCR finds is that access officers in universities tend to ask students to tell them what services they require rather than telling the students what is available. The student is at a disadvantage before the first lecture even begins, as they may not know about all the services available.
Considerations about accessibility and accessible spaces should be on the forefront of the mind of anyone tasked with building, arranging, or coordinating a space, not just people who need accommodations, and people need to expand the way they think about accessibility, actively seek out and solicit information to make the spaces they control better. People often seem to think that accessibility is something you add when someone asks for it, which presumes that people with disabilities will always ask for it, when instead, more commonly, we go ‘oh, that space isn’t accessible or there’s not clear information about accessibility, so I won’t bother attending that event.’]]>
Jim Ramplin was ‘made redundant’ from his job as a mechanical engineer in 2008, and he chose to get training as an horologist so that he could start a new career repairing clocks. Given the economic problems many nations are experiencing right now, a lot of people are being forced to change careers and come up with new ways to support themselves and this is a narrative playing out all over the world as people are released from their jobs and must find new ways to support themselves. Some are successful. Some are not. It’s a highly competitive market for jobs right now. It’s interesting to see which of these stories newspapers choose to cover; generally, they want to find some kind of hook to draw readers in, like a banker becoming a janitor. In Ramplin’s case, he’s of interest because he’s a polio survivor.
Yet another news article breathlessly reporting that, did you know, some people with disabilities like to work? And that, when people with disabilities who are working lose their jobs, they have to go find new ones! Wow, they really are just like real people. Such articles typically elide the barriers to employment for people with disabilities, like ableism in hiring practices, inaccessible workplaces, and of course poverty traps created for disabled people; if you receive government benefits, working puts your benefits in jeopardy, forcing many people who want to work to remain unemployed or underemployed.
Almost always, employment for people with disabilities in articles like this is framed as a personal problem; people just need to ‘overcome’ their disabilities and then they will be able to find work. The social barriers encountered while seeking work, everywhere from trying to go to college to get training for a job to trying to deal with workplace harassment, are simply not discussed or even acknowledged. This allows readers to rest secure in the idea that skyrocketing unemployment rates among people with disabilities are our fault because we’re not trying hard enough, and that there’s nothing they can do to confront unemployment in the disabled community. Not their problem.
Tiptree Clocks, his business, appears to be thriving, so kudos to him for finding a niche market and exploiting it, for being able to make a living when a lot of people are struggling. Clearly he’s a savvy businessman, and that’s got absolutely nothing to do with his disability. These articles aren’t talking about what makes a good entrepreneur, though. They’re not profiling people because they’re good at business, but because they have personal traits that make a convenient hook for an article.
This story frames people like Ramplin as having ‘grit and determination’ to ‘turn tragedy into triumph.’ The tragedy in the framing of the article isn’t his job loss, but his disability.
In another profile, Ramplin says:
I’ve never let my disability beat me. If I’ve wanted to do something I’ve always gone ahead and done it – I’ve always been independent. I also have diabetes and I do occasionally get back pain, and if I’m not feeling too good I just stop work and rest and then go back upstairs and carry on, which is the advantage of being my own boss.
It’s pretty clear that he doesn’t view his acquired disability as a tragedy, and it’s quite noxious that the media keep framing disability as a tragedy when many of us do not feel that our lives are tragic. This quote is a bit supercrippy, but it’s notable that he discusses creating accommodations for himself and alludes to workplace barriers for people with disabilities, although he doesn’t address them directly. Being able to stop and rest is not a benefit provided to very many disabled employees and the only way many people with disabilities can get workplace accommodations is by being self-employed, being our own bosses.
News articles about work and people with disabilities so commonly inhabit this patronising space which often leads me to feel like the writer feels that we are, for the most part, unemployable because most of us aren’t capable of ‘overcoming’ our disabilities. Since employment is often treated as the only viable way to ‘contribute to society,’ such articles underscore the idea that we aren’t contributing anything to our communities unless we’re working. Very rarely do I see journalists confronting the social attitudes that make it difficult for us to obtain employment and stay employed. I guess that wouldn’t make for such a feelgood article.]]>
A friend of mine is getting married to a woman who has multiple sclerosis. His family is very upset by this fact (along with a few other issues they have with his bride-to-be). Should something like having a chronic illness even be a consideration when choosing the person to spend the rest of your life with? I wonder if my friend is setting himself up for a very difficult road ahead.
Ah, yes, the old concern trolling ‘for the friend’s own good,’ turning to an advice columnist for backup; this letter seems to pretty unambiguously suggest that the family is justified in being ‘upset’ by the friend’s choice of life partner. It’s sort of surprising the letter writer is even consulting Hax, since the opinions in this letter feel very clearly formed, unless this is some sort of devious plan involving casually leaving the paper open to this letter and the expected approving response to say ‘see!’ to the friend.
Unfortunately, these kinds of attitudes are distressingly common. People who marry people with disabilities are told that they are ‘brave’ for marrying their partners and staying with them, and they’re provided with plenty of outs for escaping the relationship; when things get tough, they’re encouraged to abandon their partners ‘because no one would blame you,’ and all problems in the relationship get reduced to the disabilities. And, of course, people preparing to marry people with disabilities are told that they should ‘reconsider’ and ‘think seriously about’ the relationship. The spectre of caregiving is raised to terrify people into thinking ‘oh, right, I don’t actually love this person! Thanks for saving me!’
And Hax’ response illustrated why I love Carolyn Hax:
Of course he is.
And of course a chronic illness should be a serious consideration — your friend would be doing this woman no favors if he didn’t take her prognosis heavily into account — but for many people it’s not a make-or-break consideration.
The way you pose your question, I’m not sure whether the “difficult road” you anticipate is the multiple sclerosis or the disapproving family. Either way, you’re right. However, there are plenty of people who think the toughest road would be the one traveled without the person they love.
Now, it’s not as if illness spins jerks into gold; if your friend’s family has legitimate concerns about the fiancee’s character, then I do hope they’ll spell this out for him.
But if your friend feels, eyes open, that his fiancee is the one he wants at his side, and if his family’s objection is to her illness (with the “few other issues” thrown out there as a fig leaf), then all I can say is, shame on them. Even though I utterly loathe that expression.
People are very fond of judging each other’s marriages. It honestly seems to be a bit of a national pasttime, whether people are judging people for the ceremony, or who is getting married, or changing names (or not changing names), or whether there are children involved, or any number of things. It seems to be generally socially acceptable to meddle in someone’s marriage planning and to make pronouncements about how a marriage is ‘doomed from the start.’ And these comments often come from family. When disabilities are involved, those comments tend to ramp up, and there can be an undertone of extreme ugliness that can be very revealing about social attitudes and the beliefs people feel it’s appropriate to air.
Here, the family has decided they don’t like the fiance, maybe because she has MS, maybe because of something else. The point is that the letterwriter seems to think the MS is sufficient reason to call off the marriage; how could the letterwriter’s friend be expected to marry a woman with MS? They’re in for a ‘hard road’! Everyone knows that people with chronic illnesses shouldn’t get married (and of course that they never marry each other). The letterwriter seems to be hitting Carolyn Hax up to justify ableist beliefs; to me, it seems clear that the ‘hard road’ referenced isn’t dealing with the family, but, rather, being married to a disabled woman, and Hax didn’t let D.C. off the hook.
I know that at least some of our readers (and contributors) are married or in relationships and encounter these kinds of attitudes about their relationships; how do you counter them? Do you counter them?]]>
Dear Abby: I am the parent of a child with special needs. To an outsider he looks different; adults and children stare at him when we’re out. My son is not aware of their impolite behavior, but I am — and it really irks me. What should I say to these insensitive people? — Boiling Mad in New Jersey
Dear Boiling Mad: I don’t think you should say anything. It is not unusual for individuals of every age to do a double take when they see someone — or something — that is “different.” Of course staring is impolite, but unless someone makes a remark or asks a question about your son, you should ignore the person.
Abby got some reader mail in response, so she decided to run a column featuring some of the letters she received. As FWD readers know, I am not a fan of the euphemism ‘special‘ and I dislike labeling basic needs as such. However, it’s very common, so I pretty much expected a thicket of ‘special’ this and ‘special’ that in Abby’s column. But I also expected at least one letter from a person with a disability, because Abby has run letters from us in the past on topics relating to disability issues.
Were my expectations met? No, they were not. The title of the column is ‘Special-needs kids build bridges of understanding.’ Three of the five letters were from mothers of children with disabilities and they all pretty much said that we have a responsibility to educate people staring at us:
…I now regard it as an opportunity to educate them about autism. I hand them a card explaining it that contains a link to the Autism Society of America.
This tactic, rather than ignoring people, is the way to go. If more people educated others, the stares and rude comments would become smiles and support.
One letter, well, here, I’ll give you the first paragraph:
I worked with special-needs children for a number of years. I actually believe that it is good when people stare. It gives us a chance to help the child learn social skills.
I’m one of those folks who “stare” at others. By no means is there ever a bad intent. I’m a people-watcher. I love watching people communicate in different ways, like signing. Whether someone is in a wheelchair or has a visible disability, I value each and every person.
Maybe “Boiling Mad” doesn’t understand that many of us are willing to reach out, lend a hand or just be friendly. I wish to embrace, not ignore, and I hope my behavior isn’t perceived to be offensive.
So, we heard from parents. We heard from people who are a fan, evidently, of the ‘tough love’ school of thought; staring makes you stronger! And we heard from someone who likes to stare at people.
We did not hear from anyone who gets stared at. Ouyang Dan, writing about a different advice column involving the nondisabled gaze and what to do about it, pointed out:
I get extremely uncomfortable and irritated with people who can’t manage to be polite and respect the privacy of other people. “Othering” is a concept that riles me pretty good, and othering people based on circumstances beyond their control is right up there on my list of things that will get you “unfriended” or “unfollowed” in a keystroke. Beneath that is treating people with disabilities as if they do not have a right to privacy when they are in public with you. As if their existing in a manner that you find abnormal is somehow negating their right to eat lunch without you staring at them.
Abby’s decision not to represent any people with disabilities in her column is noted. I’m willing to bet that some people with disabilities wrote in about how much they do not like being stared at, to point out that when everyone is staring at you, it is most definitely perceived as offensive. It’s not ‘embracing’ at all to feel like you can’t go to the grocery store, ride a horse, sit in the library, or do any number of other things without people gawking at you. Being stared at is not fun.
It is also not an opportunity for a teachable moment. People going about their daily business are not diversity educators. They are human beings, doing human things, and just wanting to get those things done. Having to question whether or not you want to go out on any given day because you don’t feel up to dealing with stares is not enjoyable.
I don’t know how to deal with staring. I get stared at a lot and it upsets me. Ignoring people doesn’t quite seem to work. Staring back sometimes shames them into looking away, by reflecting their gaze back on them and forcing them to consider how it feels to be stared at, but I really have a hard time with eye contact and often staring back at people forces me to meet their eyes. Sometimes I say something like ‘pardon me, is there something on my…’ and then they mumble and look away. But I definitely do not feel like it’s my responsibility to educate people when I’m going to the post office or having dinner with friends. They can go educate themselves. Or they can pay to take a workshop where I would be more than happy to educate them in a structured classroom environment.]]>