Category Archives: 101
Also see: An open letter to abled people who use disabled parking spaces by Annaham, which this is jumping off from. Since I drafted this, s.e. also wrote Dear Imprudence: Who Appointed You the Parking Police?!
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.
Usually I relish picking apart a crappy article in the news for this feature, but today, I want to take a moment to rant about a phenomenon so widespread in the media that I don’t feel fair singling out one poor journalist for my ire. I’m cruel, but not unreasonably so. Also, I had a hard time picking between so many examples, but the first explanation makes me sound like a nicer person, so let’s go with that, ok? Excellent.
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.
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.’
When I tell people I write for a feminist site focusing on a disability issues, one of the most common responses I get is confusion. ‘What does disability,’ people ask me, ‘have to do with feminism?’ I’ve written before, very topically, about why disability is a feminist issue, and I’d hope that a lot of the content on this site backs that assertion up, considering that we’ve talked about a number of issues considered important in the feminist movement, like reproductive rights and rape, just to name two examples.
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.
There’s a common idea I encounter among nondisabled people when it comes to discussing accessibility and making spaces accessible to all users. That idea is that as long as there’s a ramp, a space is accessible. That accessibility is solely about ramps, and nothing else, so once you’ve got a ramp in place, you’re covered.
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.’
Back in July, the following letter/response ran in Dear Abby:
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.