Category Archives: social attitudes
I’m pretty open about my health issues. To be honest, I don’t know any other way to be. I know how to strategically hide my disabilities from strangers in passing interactions, but from the people with whom I interact on a daily basis? Given my appearance — tall, slim, young white girl, pretty enough, clean and conventionally dressed, perfectly middle-class — you’d think it would be easy to keep from communicating variant health, while in reality it is highly tasking. It takes energy to mask my medication-taking, body-resting, trigger-avoiding, activity-budgeting ways from the people around me, and I’m already running an energy deficit just to be around them in the first place.
So fuck it. I don’t hide it when I have to down a pill. If pain, fatigue, or cognitive issues are preventing me from doing something — a task requiring me to stand up or walk somewhere when my back pain is flaring up; speaking with anyone by telephone when my head is throbbing and my brain is not processing full sentences — I say so. I’ve stopped bothering to tuck in my TENS wires to make them completely invisible. When people ask me about the Penguins game last night, the response they hear begins with a mention of my 8:30 bedtime.
There are drawbacks to this. Sharing or not sharing information about one’s health is an extremely fraught decision; some people consider this information rude and gross (even when the actual content is totally innocuous), it can invite unwanted questions and speculation, and there are people who will use your undisguised behavior or the information you have volunteered against you in the future. It amounts to a choice between a life of concealment, which can quickly drain a person’s spirit and often aggravate their actual condition — and a life of vulnerability, never knowing what will be held against you, or by whom.Read more: I can’t count on anybody to understand. (Blogging Against Disablism Day 2010)
By amandaw 1 May, 2010. accessibility, invisibility, small stories, social attitudes, work ableism, accessibility, assholes, badd, badd 2010, chronic illness, chronic pain, disability, disclosure, head asplode, health, migraines, myths and misconceptions, pain, pain management, pain triggers, passing, personal, problematic attitudes, social treatment, stories, things people say, welcome to my life, work
Today is the “beginning” of Blogging Against Disablism Day 2010. I put beginning in quotes there not just because the day is done in Australia and the West Coast of Canada is still waking up, but because Diary of a Goldfish, who hosts BADD every year, acknowledges that people with disabilities are not necessarily able to post precisely on the date of a blog swarm – that there is inherent disablism in demanding that disabled people write a post on a specific time table.
Every year since I started participating in BADD, I’ve had many people ask me how they – both as currently non-disabled people, and as people with disabilities – can best participate in BADD if they don’t want to, or can’t, write a post, put up a photo, or create a video or podcast. Here is just a short list of suggestions:
Check out the ever-growing list of BADD posts over at Diary of a Goldfish. Even “just” (there’s no just about your time/energy investment!) reading people’s posts and learning about their experiences contributes a lot to BADD. Blogswarms like this are all about raising awareness, and raising your own awareness is just as important. As well, you may find a whole new set of blogs to add to your blog-reading lists. There are so many bloggers with disabilities out there, fighting the good fight against ableism every day.
Comment on some BADD posts. I know that every time I write something and it gets no comments, I feel like I’ve put effort out for nothing. [This is not a demand for more comments for me! I’m just sayin’.] If you have the time/energy to do so, I would really encourage you to leave comments in support of BADD posts. They don’t have to be lengthy: even just “This post was great, thank you for writing it” can make a difference. If you’re up to writing more, go for it! But just leaving words of support can be a big deal.
Tell people about the awesome posts you’ve read. If you have a blog, link your favourite BADD posts so others can check them out – if not today, then over the next few days, or even weeks. Months. They’re not going anywhere, and although we all hope the prejudices against people with disabilities are going to disappear, that’s probably not going anywhere anytime soon, either. There’s nothing saying you have to only link to BADD posts this week. If you’ve got a twitter account, tweet some links to your followers! The hash-tag for BADD seems to be #badd, but I like to also tag my tweets #disability as well. (This is selfish on my part – I follow the #disability tags on twitter.)
Think about dis/ableism in your every-day life. This one is mostly for the non-disabled people, or for people like me – I always need to remind myself to think outside my box of “what disability looks like”. There are huge swaths of my workplace that someone in a wheelchair can’t get in, and I went to a university last week that claimed it was impossible to put floor announcements in their elevators. Many [not all – I’ve heard very good things about some places, like L’Arche] of the group homes in Canada for people with cognitive impairments are more like prisons than the “home-like” environment they claim to be. The websites for each of the major political parties in Canada are inaccessible to many people with disabilities, and events that are held for “all Canadians” have no captioning, no visual description, and no way for Sign users to participate.
I think BADD is a great opportunity to see just how much is out there about disability on the internet. For disabled people who may be feeling isolated, it’s a great time to see just how many people are out there that struggle with similar issues. For the non-disabled, it’s a great way to start educating yourself about disability issues.
The Blogging Against Disablism 2010 Page will update throughout the day. Here’s just a tiny selection of posts that I’ve had the chance to read, and highly recommend.
When I was in fourth grade, we had a class game. Each one of us had to bring in a photo from when we were very young and the photos were laid out in a grid on the wall. Each photo had a number, and students had to guess which photo went with which classmate by numbering a class list. As I recall, the photos were up for a few weeks, giving students ample time to review them and note their guesses.
One photo was 100% correctly identified by the class. One.
That photo was mine. What made it so easy to connect my chubby little baby face with my wiry little fourth grade self? It was all in the mouth; my baby mouth was turned down, exactly like my fourth grade mouth, exactly like my mouth right now. That’s because that’s the neutral position for my mouth.
People have hassled me about this for pretty much my entire life and it got worse after I incurred some facial nerve damage. Now, when I try to smile, sometimes it pulls my mouth into a grotesque leer. Sometimes one side of my mouth tilts up while the other twists down. Very rarely, I can ‘naturally’ smile. Both ends of my mouth turn up and I look ‘happy.’ Because, of course, the mouth is the only social cue for reading happiness, and people never, not ever, smile when they are not happy, right?
And I’m constantly told to smile. By complete strangers in the street. By ‘friends.’ When I worked in retail, by customers.
‘What have you got to frown about?’ ‘Smile, it would make you look so much nicer!’ ‘Why are you always frowning?’
The ‘smile, baby’ problem, as I call it, is something which a lot of people who are read as women experience. I will hazard a guess that at least some of our readers have experienced it; whatever the neutral position of your mouth is, whether or not you have nerve damage, whatever your mood at the time, someone, somewhere, has probably ordered you to smile.
It’s enough of a meme that it’s even cited as a feminist issue now and then; the smile police have some interesting intersections with how society thinks about women and their bodies. As my friend Hilary put it in frustration the other day, ‘I hate that I am expected to be nice all the time because I’m a woman.’ Not only are women expected to be nice (‘watch your tone!‘) they are also expected to be physically presentable, which means that they need to ‘smile, baby!’
It is indeed both common and rude to command others to smile, as if this conferred a favor by improving their outlook on life.
People order each other to smile because they feel uncomfortable around people who are not smiling, especially when those people are women (or are read as such). Women are expected to be nice and sweet, to make other people feel comfortable. A woman who says ‘hey, I think there’s a problem here’ is being ‘negative.’ A woman who doesn’t smile while she’s being harassed is ‘humourless.’ A woman who prefers to stay focused on tasks is a ‘cold bitch.’ Significant gendering is involved here; women have an obligation to look and act a certain way and when they don’t, they need to be hassled until they do.
And it’s perfectly acceptable, apparently, to talk up to a complete stranger and demand a smile. Just passing a woman who isn’t smiling in the street is such a horrible offense that it must be corrected immediately by telling her to ‘turn that frown upside down!’
Have you encountered the smile police? How do you deal with them?
Editor’s note: We are very pleased to host this post from RMJ, and will be featuring some more writing from her, and several other awesome guest posters, soon. FWD welcomes guest posts: please email guestposting [at] disabledfeminists.com for more information.
RMJ is a twentysomething with OCD who grew up in Kansas and currently lives in Virginia. She works in education and loves cooking, cats, and television. She blogs about feminism and stuff at Deeply Problematic. This post also appears at Deeply Problematic
Athletes with physical disabilities (hereafter AWPD) are a problematized group. Their accomplishments are questioned and devalued as less valid or challenging than those of able-privileged athletes. They are not party to the often problematic veneration of athletes in today’s society, nor are they permitted to participate in generalized sporting events.
Arm-wrestling is a sport, though, that seems to both accommodate and welcomes athletes with disabilities into their ranks. There is a specific subset of arm wrestling for athletes with disabilities that seem to be a regular part of official arm-wrestling tournaments. I don’t know much about the sport and I’m not currently physically disabled, so my perspective on this is far from authoritative. But my tentative reaction to this is positive, particularly since athletes with disabilities can and do succeed in general competition.
Larry Feezor is an athlete with disabilities who competed recently in the 3rd Annual U.S. Open Armwrestling Championship. He has used a mobility aid since a motorcycle accident paralyzed him from the waist down. This story from an Oregon television station makes Feezor the focal point of the championship. The story is pretty short and context is important to my analysis, so I’m going to reproduce it here in full:
FLORENCE, Ore. – The Third Annual U.S. Open Arm Wrestling Championship wrapped up in Florence Sunday, as amateur wrestlers took to the ring to battle it out.
One competitor stood out for beating the odds: Larry Feezor.
He has been arm wrestling for 18 years, traveling from Weaverville, Calif., to Oregon to participate in the competition. This sport is his outlet since he became disabled.
“I was involved in a motorcycle accident and a drunk driver ran me off the road,” Feezor tells KVAL. “I hit a bank at about 70 miles per hour, [and] was paralyzed from the chest down.”
Feezor received roaring applause when he beat his first opponent.
On Sunday he arm wrestled some of the strongest competitors at The Three Rivers Casino. And he wasn’t going down without a fight.
“Right after my accident,” Feezor said, “I told my father that I would fight, as hard as I could, for as long as I could.”
Feezor isn’t letting his disability bring him down. As a former athlete, he said his body may not be like it used to be, but his mind is stronger than ever.
“I am out here just like these other guys,” Feezor said. “I just happen to be in a wheelchair.”
Before I break this article down, I should mention its good points. It is wonderful that athletes with disabilities recognized. It’s fantastic that Feezor’s achievements are reported on in a positive fashion. Feezor is ostensibly framed as normative. The newspaper is using Feezor’s words and Feezor’s voice, rather than, say, his father’s.
However. Feezor’s participation is the only aspect of the tournament that’s detailed, and his accomplishments are not well-articulated. The singling-out of Feezor and complete erasure of any other athletes in competition is problematic because it trivializes Feezor’s competition in a sport. It implies that the sport is only notable for the inclusion of a person with disabilities – Feezor is not in a competition, but instead someone to be cooed over and patted on the head simply for participating. He’s not being applauded for his accomplishments, he’s being singled out because he “beats the odds”, whatever that means. If this were an angle in a story that clearly reported on the events of the tournament, it would be significantly less problematic. Feezor would be presented in the context of other athletes, and not just othered because of his disability and his marginalized sport.
An example of this is Joby Matthew, an Indian arm-wrestler, who has underdeveloped legs due to Proximal Femoral Focal Deficiency. Matthew seems to be higher-profile than Feezor, but increased coverage also means increased problems, particularly since it’s from the Daily Mail:
Who needs legs? Meet Joby, the 3ft 5in world champion arm wrestler who can bring down opponents twice his size
Instead of bemoaning what he lacks, Joby Matthew is using what he’s got.
Matthew’s accomplishments are not notable in this article: only his disabilities. I’m not quoting or going through the whole article because the able privilege is so dense. The first line is indicative of the attitude taken in the article: Matthew doesn’t “bemoan”, unlike those other people with disabilities who would surely be champion athletes if they just tried. The construction is an ableist implication that other folks with disabilities are lazy whiners. Throughout the article, every reference to barriers Matthew faced is immediately matched by emphasis on how he overcame this disability. The focus is not on his exceptional effort and achievements, but on the “heartwarming” “good cripple”.
There are a few good aspects of the article. It’s composed largely of quotes from Matthew, and it does make note of his many medals and of his training regiment (though that, of course, is as much focused on what he can’t do as what he can’t.) Matthew’s childhood athleticism is made a major point of focus, particularly his struggles in playing with other children. While I appreciate that the authors focused on quotes from Matthew, the focus on competition with currently able-bodied athletes frames participation in sports against currently able-bodied (CAB) athletes as the standard for athletic accomplishment for AWPD.
While I do not love the article, I loved these pictures of Matthew and am quite impressed with his accomplishments and his goal of climbing Mount Everest. Though the exceptionalist attitude makes the context problematic, these pictures are awesome:
Photo: Joby Matthew holds himself up with one hand while giving the thumbs-up with another. He is on the bank of the Periyar river on the outskirts of Ernakulam. He and his fantastic mustache smile broadly at the camera.
Photo: Joby Matthew and an unidentified man arm-wrestle on a weight bench. The unidentified man, who has a beard and fully developed legs, grips the far side of the weight bench. Both men are grimacing and neither appears to be winning.
These photos highlight his exceptional abilities, and while his disability is present and visible, it’s a part of his athleticism. However, there are only two pictures in the eleven-part picture post that actually show him competing. Training and physical strength are interesting and relevant, but this is about sports: as with the article, the focus should be on his achievements as an athlete, not on OMG HOW DOES HE DO THAT? or OMG HE BEATS NORMAL ATHLETES?
The accomplishments of athletes with disabilities face a double bind. In most cases, they are ignored and erased; they are thought to be impossibility and a contradiction. When AWPD are covered in the media, it’s rarely a positive, normed framing of them as accomplished athletes with valid bodies. They are objects instead of curiosity; they are heartwarming inspirations for the currently able-bodied; they are not quite freak shows.
Moderator’s note: Moderation on guest posts is often much slower than “usual” moderation times.
A scene in which the title character (who speaks in the third person) is explaining the way his brain works to another character:
”Cognitive disorder’ is not an accurate description of what happens inside Marcelo’s head. ‘Excessive attempt at cognitive order’ is closer to what actually takes place.’
‘Yeah? I like excessive order myself. Is that an illness?’
‘If it keeps you from functioning in society the way people think a normal person should, then our society calls that an illness.’
‘Well, society is not always right, is it?’
–Marcelo in the Real World, by Francisco X. Stork
When I’m at home, I usually have a regional radio station that plays mostly classical music and some NPR on in the background. One of the features I happen to really like is Car Talk, a call in show about car issues which has been running for a number of years now. Car Talk is not without problems; sometimes I really cringe over the things said on the show, but it’s also sometimes really sweet, and funny.
They don’t just offer advice about cars, sometimes there are discussions about life problems, and I’m thinking in particular of an ongoing series which ran when a college student who was really confused and unhappy called in to the show to ask for help. Not only did they give great advice on the show, they read followup letters from readers in future episodes, and eventually got a letter back from the student, and it was pretty neat. Not just for her, but for other people in the same position who might have heard it and gotten something out of it.
I say this to set the stage for a promotion the station airs sometimes.
Car Talk sponsors a program called the Vehicle Donation Program. Basically, if you have an old car you don’t want, you can donate it, and the program will sell the car and send the proceeds to your radio station, and then you get to take a tax deduction. Car Talk has recorded a couple of promotional spots which radio stations can air to alert listeners to the existence of the program. Since public radio relies on support from listeners, stations want to make sure that people are aware of as many donation options as possible, and thus the local station airs some of these promos on a pretty regular basis.
Some of the promotions for the car donation program are cute and funny. Jokes about clearing the driveway of old jalopies, or trading in your gas guzzler for a car with better mileage, for example. Tom and Ray, the hosts of Car Talk, are good at silly patter.
One of them isn’t. It centers around the idea that people who are reluctant to get rid of old cars are ‘suffering from Vehicle Dissociative Disorder.’ Har har har, it’s so funny, get it?
Yeah, I don’t laugh either, and the radio station plays this promo all the time. I just…want to throw things every time I hear it. I wrote a letter to Car Talk and the station about why that promo bugs me so much, and why can’t they use the promos that aren’t so enraging, but I haven’t heard back.
I’m just one listener, right? What does it matter.
And I thought about the fact that the local station just ran their biannual fund drive, and how, honestly, one of the reasons I did not want to donate was because of this one promotional spot. This one thing, this casual ableism, is a barrier to me joining the station as a member. And the station could swap it out for a different spot, and solve the problem. Does the station care about not having my membership? I don’t know. And I don’t know if there are other listeners out there who are also choosing not to contribute to this station’s fund drive because of this promo, or who choose not to be involved with fund drives at other stations (Car Talk is syndicated) because of this promo.
I am not the only person who writes letters about things like this. And these letters are ignored all the time. Even when people organise a mass letterwriting campaign, it doesn’t seem to work very often. Sometimes, the consequence of saying ‘hey, please don’t use this language’ is having your letter presented for mockery, or being banned from the comments of a web site, or having people roll their eyes every time you start talking. It’s a hard thing to do, to say something unpopular, especially for people who keep doing it, and I have immense appreciation for people with disabilities and allies who communicate about this stuff on a regular basis, sometimes in very hostile spaces.
It never ceases to amaze me that we make up around one fifth of the population and, for the most part, we are treated as though we don’t matter and don’t exist.
In San Francisco currently, there is something of a debate brewing about Mayor Newsom’s proposed sit/lie laws, which would make it illegal for anyone to sit or lie on any public curb or street in San Francisco (with a couple of exceptions).
The intersections with disability here are rather clear. For one thing, there are some intersections between homelessness and disability, because some homeless people are, for example, mentally ill or have disabling physical problems. Do either of these things make them unworthy of compassion, or not human? Of course not, but from the way this proposed ordinance is designed, it is, on a very basic level, criminalizing homelessness even more than it is already criminalized (not to mention socially stigmatized), while taking extra “common sense” steps to avoid citing non-homeless people for an offense. Observe the following response to concerns that SF police would begin to crack down on non-homeless people were the laws to go into effect:
During a heated, five-hour Board of Supervisors public safety committee hearing on the issue Monday, Adachi showed photographs of behavior that would be illegal under Newsom’s proposed law: a well-heeled tourist sitting on her luggage as she waits for a cab, a little boy sitting on a sidewalk clutching his skateboard, and tourists sitting on a curb and gazing up at the sights.
Assistant Police Chief Kevin Cashman said all of those people would be warned first to move and that none of them would probably receive a citation.
“Obviously common sense is going to be part of the training with enforcement of this statute,” he said at the hearing.
Ah, yes, “common sense.” Common sense, apparently, still makes the further stigmatization of homeless people de rigeur. Because apparently, they don’t deserve to sit down in public, unlike “well-heeled” tourists and neighborhood residents. I wonder what the response to a person with disabilities — tourist or not — needing to sit down on a public street might be? Someone waiting for an ambulance? While that is approaching a bit of a slippery slope argument (which I generally like to avoid), it is worth considering, simply because “common sense” will mean different things to different people — those whose job it is to enforce the statute included.
Also interesting is the framing of this ordinance in terms of concern for children. From one of the SF Gate articles:
Newsom, who bought a home in the Haight recently, was convinced to support an ordinance after walking along Haight Street with his infant daughter and seeing someone smoking crack and blocking the entrance of a business.
Certainly, children need to be protected from dangerous situations or potentially dangerous situations, but is an ordinance that criminalizes the poor and homeless — not all of whom are recreational drug users or addicts — really the way to do it?
Additionally, nowhere have I seen any plan to increase the number of homeless shelters or services for homeless people attached to this ordinance. The implicit message behind these proposed sit/lie laws seems clear: It’s too bad you’re homeless, but don’t you dare be homeless on our streets, because it might make our city look bad. Oh, and you certainly shouldn’t expect the city to help you not be homeless — even after it cites you for breaking the sit/lie law.
(Cross-posted to ham blog)
He got through school, he has a good job and he married. That’s probably the biggest concern of Tourette’s sufferers and their relatives: Will their life be normal?
This quote comes from Anne Miller’s Washington Post piece, ‘‘American Idol’ segment helps push Tourette’s Syndrome into cultural mainstream,’ which I mentioned in ‘Whose Voices?‘ There’s a lot to unpack here, because there are a whole lot of problematic things going on.
‘Normality’ is often treated as a holy grail, especially for people with disabilities. Everything’s ok, as long as we can be normal, or at least act normal. ‘Normal’ is, of course, decided by the dominant members of society and any attempt to redefine normal from another perspective will be met with significant pushback. People who reject society’s definition of normal are viewed as highly suspect; look at the critical reporting on the Mad Pride movement, for example. How dare those people say they don’t want to take medications? How dare people say that being ‘normal,’ that fitting in with society’s demands, isn’t a big priority for them? For that matter, how dare people reject psychiatricization and the very idea of being ‘mad’ at all?
What this quote tells us is that getting through school, having a ‘good’ job, and getting married are the paragons of normality. People with disabilities who accomplish this triad of goals are role models. We should all aspire to this. Anyone who doesn’t is just giving up. Anyone who doesn’t want a college degree, a good job, and a spouse is clearly a social failure, no matter what ‘reasons’ can be mustered to explain why these goals are not of interest.
Never mind that there are barriers to getting through school. Everyone wants to go to school, right? There is not one single person in this world who is not interested in going to college. Who doesn’t believe that school is something that ou needs. Who has other goals. College is where it’s at! After all, if you don’t go to college, you are an abject failure who will never get anywhere in life.
That’s certainly what society seems to think. People are shamed for not wanting to go to college or for being unable to attend if they do want to go. Let alone people who want to leave high school early; they are informed that they are throwing their lives away and ‘dropping out.’ If you do decide not to go to school, you had better be an accomplished artist or musician or writer or something to redeem yourself in the eyes of society and even then people will express amazement about having ‘gotten so far without a college degree.’
And, of course, everyone wants a job, right? Specifically a ‘good job’? People who do not want to work are lazy. Because working is empowering! Not wanting to work makes you morally suspect and questionable. Not being able to work, even when you very much want to do so, is a moral failing; just try harder! If you’re not working, you must be feeding off the government, which means that you expect the working people to pay for your existence. Should you do something like choosing to live with your parents, you are obviously not realising your full potential.
Marriage, too, is the ultimate social goal. There are no reasons why anyone on Earth would not want to marry. First comes love, then comes marriage1, as we know, so clearly, if you are not married, you are not capable of love or being loved. And, of course, everyone who does want a spouse can get married, so it’s not as though there are any legal impediments to marriage.
These are all things which people believe.
These are all things which ‘advocates’ believe. Note that it’s right there in the quote; people with Tourette’s are ‘sufferers’ and their relatives just want them to be ‘normal.’ Miller is proud of her husband for ‘succeeding’ and being a ‘role model’ and she wants other people with disabilities to ‘succeed’ in the same way. I’m sure it’s well-meant, but it comes across as yet another reinforcement of social attitudes about who is normal, who is a good person, who is worthy.
Who gets to decide who is ‘normal’? Who gets to decide which life goals we should aspire to? It’s the people who write the dominant narrative.
Let’s contrast that quote I used at the opener with a quote from someone who actually has Tourette’s, from the same article:
At a recent public appearance, Koterba met a mother and her young daughter with Tourette’s. The woman asked Koterba if her daughter would have a normal life. It broke his heart, Koterba recalled. “No,” Koterba told the girl. “You’re going to have a great life. An amazing life. A creative, beautiful, wonderful life.”
Here in the U.S., there’s been a lot of buzz about a new immigration law passed in Arizona (including on meloukhia’s tumblr, where I first saw it). Their state legislature just passed a bill that “makes it a crime to lack proper immigration paperwork and requires police, if they suspect someone is in the country illegally, to determine his or her immigration status. It also bars people from soliciting work as day laborers.”
This is a big change from the current situation. Because immigration is a nationwide issue, the federal government makes the immigration laws. There is a federal Department of Citizenship and Immigration Services that administers applications for immigration status. There is a whole department of Immigration and Customs Enforcement with quasi-police enforcement agents that put people in quasi-jail immigration detention facilities. It’s a whole federal system that runs parallel to the police and sheriffs who work for individual cities and counties.
For a long time, not only were local police not solely responsible for enforcing federal immigration laws, it was a longstanding rule that state and local police did not have the authority to enforce those laws. State and local police actively tried to distinguish themselves from immigration enforcement so that community residents who were immigrants would continue reporting crimes and helping the police with investigations. The split between responsibilities serves an important purpose in protecting overall public safety.
This is why it’s a big deal that this new law would require local police to determine the immigration status of anyone they suspect to be in the country illegally. Given the vague description of what would be an acceptable reason to suspect someone to be undocumented, it’s extremely likely this is going to translate to “check the papers of anyone who is Latina/o.” “A lot of U.S. citizens are going to be swept up in the application of this law for something as simple as having an accent and leaving their wallet at home,” said Alessandra Soler Meetze, president of the American Civil Liberties Union of Arizona.
Certainly a police officer fulfilling their requirements under this new law might in fact discover that someone is undocumented. But this law also gives every police officer carte blanche to insist on immigration paperwork from anyone they want – another tool for harassment and intimidation that will surely be deployed selectively. It warns not only undocumented people, but all immigrants and anyone who might appear to be or resemble an immigrant in any way – stay inside. Disappear. Vanish. We do not want you here and if we see you we will hassle and interrogate and judge you.
This law just used the official voice of the state to tell this whole group of people – most of them people of color, most of them legally present in the U.S. – that they are not wanted.
That message of not being wanted, that directive to become invisible and disappear, that clear desire that a whole group would just go away and stop being a bother. That’s the same feeling I get when reading articles like this one in the Fresno Bee bemoaning an effort to get local businesses to provide accommodations for people with disabilities. Just think of the economic effect on local retailers! They’ve been open for 20 years! How dare the PWDs file lawsuits instead of just asking the proprietor who I’m sure is very nice and would just love to help out voluntarily! The message is the same – having PWDs here is too expensive. Too much work. Something to be given only out of the generosity of those in charge, not demanded. If only the PWDs would just go away our local businesses would be fantastic!
In one instance, popular opinion and the business community are telling PWDs to go away or be invisible. In the other instance, the state government is telling immigrants to go away or be invisible. Both are premised on the acceptance of the idea that it’s ok to look at a minority group of people and reject them, as a group. That’s why I reacted negatively to both those news articles – it is not ok to oppress people as a group. If it’s ok to treat immigrants that way in Arizona, that legitimizes treating PWD that way in Fresno. And this law is such a big step in the wrong direction that it makes me worried about similar erosions for other groups – including PWDs.
There seems to be a bit of a theme these days of nondisabled people writing about the disabled people in their lives for the mainstream media. We had Sue Blackmore writing about her daughter Emily, who has anorexia, and Anne Miller writing about her husband, Michael Davoli, for example, and I’m sure there were countless other instances in the news in the last week or so, it’s just that these two jumped out at me.
This is a consistent and troubling theme in media discussions about disability. Anna touched upon this in ‘Making ‘Invisible Women’ even more invisible‘ recently as well, discussing an opinion editorial written for international women’s day by a nondisabled man talking about women with disabilities.
For nondisabled readers, I’m sure it’s very comforting to read about disability from the perspective of other nondisabled people. It’s a familiar zone. Common ground. But for readers with disabilities, it’s a repeat of the tired old story we’ve been hearing for years; people talk about us but they do not talk with us and we are not allowed to have our own voices.
These personal essays are framed as providing insight about living with disability, but really they are about what it is like to be a nondisabled person in a relationship with someone with a disability. Which is certainly a point of view which may be worth hearing at times, except that right now, it’s the dominant narrative. In the media, it’s not that hard to find examples of pieces by nondisabled people writing about living with people with disabilities. It is hard to find writing by disabled people discussing what it’s like to live with nondisabled people, and it’s hard to find people with disabilities writing about themselves and their own experiences.
In fact, it’s rather dehumanizing to reduce people to their disabilities, which is basically what these articles do. These articles are a reminder to reader that disabled persons are the other and that we are so peculiar and alien that we can only be written about. We cannot have our own voices; we cannot speak for ourselves, we cannot discuss our own experiences, we cannot push back against narratives which stick us in boxes and hide us away.
In Miller’s piece, she says ‘Such is life with Tourette’s Syndrome.’ Not ‘such is life with my husband, who has Tourette’s Syndrome,’ or even just ‘such is life with my husband.’ And she uses her personal experiences with her husband as a springboard to position herself as an authority on Tourette’s, just as many other nondisabled ‘advocates’ use their family members as tools to suggest that they know what it’s like and thus should be provided with platforms to speak from. After all, it’s not like people with disabilities could self advocate, right? It’s a good thing we have those nondisabled folks around to speak for us.
Many of these pieces have common elements. It’s so hard living with someone who has a disability! But I love ou anyway! There are so many obstacles and barriers I face! It’s a real struggle, being nondisabled. The authors write about having to advocate all the time, or having to use tough love, and nary a mention is made of self-advocacy. Of the feelings of the subject of the article. These articles often feel like they are all about the sacrifices the author has been forced to make to ‘live with disability.’
We are subjects. We are topics of study. We are topics of discussion.
What we are not is autonomous human beings. We are not capable of communicating for ourselves.
It’s not that our voices aren’t out there. It’s not that it’s impossible to find people with disabilities to write about disability and to write about their experiences. It’s that our voices are rarely centred beyond the disability community. We are rarely asked, for example, to write about our own disability for the Washington Post. We are rarely profiled by the Daily Mail. The media wants to talk to the people who live and work with us, with our friends, but they do not want to talk to us.
Is it because actually allowing people with disabilities to speak would destroy the carefully structured beliefs of nondisabled people? Would it make people uncomfortable to know that we don’t appreciate being fetishized, treated like objects, and silenced? Would allowing us a platform mean that nondisabled people have to confront their own ableism and the ableism inherent in a lot of these ‘caregiver writes about subject’ narratives?