When “Small” Disabilities Add Up

How many “minor health aggravations” do you need before you become an official Person with Disabilities?

I’ve been identifying as such for a few years, but I always feel like a total impostor. Not because of the reactions of other PWD: everyone I’ve met in the disability justice community has been amazing about inclusion, and folks within the community tend to be aware of invisible disabilities. But I still wonder to myself: do they assume I’m sicker than I am? Do I really have a right to be here?

Health care is so broken in this country, but so is culture. I’m only now, in my early thirties, starting to realize that there are a number of health problems I have that I shouldn’t “just accept.” At first, it was the looming spectre of the pre-existing condition (I can’t even bring myself to acknowledge that said spectre is back, I just can’t). Then it was the feeling of “hey, I’ve been ‘fine’ with this for years, it’s no big deal.”

My turning point was an issue with energy that sometimes put me in the position of sleeping 14 hours at night, then needing a 4-hour nap in the middle of the day. In other words, I wasn’t able to convince myself to seek medical help until I reached the point of a serious threat to my function, something “disabling” enough to affect my work hours. Once I hit that point, I realized that I couldn’t just keep “dealing with it.”

The Cost of Access

Dear organizers, event planners, and company representatives:

Stop assuming that access is too expensive.

Build access into your budget from the start of planning, not as a reluctantly tacked-on afterthought. When you seek funding or set prices, determine the cost of your event with a range of access services included.

Ask actual people what they need if you don’t know, and be broad in your call for input. Many people aren’t attending your events because they assumed they wouldn’t be included. It takes a lot of energy to reach out and ask for a particular access need to be met when your lived experience has been constant rejection. And not everyone who would benefit knows to ask–plenty of folks who don’t identify as disabled will have a more pleasant event when you consider things like captioning, designated quiet rooms, and nutritional variety. That means that they’ll come back, recommend you to friends, and spend their money on your event. They may think of services as “luxuries” rather than accommodations, but the principles of universal access don’t require anyone to identify as disabled. The point is recognizing that keeping access in mind benefits everyone.

Oh, and if you say you’re going to provide a particular kind of access, but fall through because you didn’t take the cost into account? You look like a jerk.

If you belittle the person asking for services, make value judgements about their request, suggest that they pay for the service, or tell a Deaf person to find their own interpreter? You look like a jerk.

If you say you’ll provide access, but ignore the actual request and provide an alternative (cheaper) service that doesn’t fully meet an attendee’s needs? You look like a jerk.

If you’re a big company and refuse to provide types of access that plenty of small non-profits bend over backwards to provide, even digging into their own limited pockets, because it’s “too expensive?” You look like a really, really big jerk.

Access matters. Do the right thing.

 

How Can Universal Design Apply to Small Non-Profits?

The principles of universal design revolve around a simple concept: design a space, an event, or a program from the ground up in a way that provides access to everyone. Rather than looking at people with disabilities as a special case that requires unusual accommodation, universal design takes for granted that users will have varying needs including physical, mental, emotional, social, cognitive, and sensory, and builds a project with that in mind. No one has to present a diagnosis, argue that their needs matter, or be called out as “special” in a space that fully integrates universal design.

Though these principles most frequently come up in areas such as building design, event planning, and website/technology design, I’ve been thinking about how they might apply to the workplace, and specifically to smaller offices. My experience is in small non-profits, an area that presents some interesting challenges. While many non-profits are built around social justice principles and the leaders may be more enthusiastic than most about providing equal opportunities to potential employees with disabilities, small non-profit leaders often assume that their capacity to provide “reasonable accommodation” will make it impossible for many PWD to work there.

Small non-profits tend to work on a very limited budget, often in shared space or whatever discounted space they can find. Redesigning work space, providing assistive technology, etc. may just not seem feasible for many non-profit leaders. But non-profits are normally masters at getting things done on a shoestring and going up against ridiculous odds to do the right thing. Why should this be any different?

I would suggest a few basic principles, borrowing from universal design, to non-profits looking to provide employment opportunities to all qualified candidates:

1. Incorporate access when making changes. Any time your organization makes a major change, it’s a great time to improve access. Don’t think about your current employees only, but consider diverse access needs and how to make your office, website, or event friendly to everyone. For example, I know of one non-profit that, when switching offices, put the refrigerator in a place that would make it physically impossible for anyone in a chair or anyone over about 250 pounds to access. Though it wasn’t a problem for any employees working at that organization at that moment, it could mean major inconvenience, making a fat person or a person with disabilities feel burdensome, in the future when already-installed furniture needs to be shifted. Similarly, a website redesign is a great time to consider accessibility. When seeking quotes from developers and designers, the organization should specify that the site must follow universal design principles. Building a site that’s accessible from the ground up is much easier than trying to implement ad-hoc changes later.

2. Write accessibility into funding. When you write a grant proposal, make sure you include line items in your budget for all access needs that will cost money. For example, a conference grant proposal should be based on the cost of space that is already accessible and should include things like ASL interpreters and printing cost for Braille and/or large-print materials. Similarly, a proposal for a technology grant should include accessible hardware and software. Even if it doesn’t seem feasible to buy specialized technology that wouldn’t be useful for someone without disabilities, think about future needs and purchase computers that will support that technology as an add-on. This practice normalizes access both within the organization and among funders. As funders see more and more proposals that include accessibility line items as a standard practice, they’ll come to expect these line items and question proposals that don’t include them.

3. Don’t assume that you can’t accommodate a potential employee. I’ve seen organizations miss out on talent several times due to simple ignorance. Don’t be that organization–ask appropriate questions and look into resources that will allow your organization to carry out its EEO policy in a genuine fashion. Though every employer can’t be fully accessible, too many non-profit leaders get an idea of what access means for a particular person in their head and then automatically assume that they can’t provide that access. I know of several DC non-profits, for example, that don’t advertise internships at Gallaudet University, though they list internships at every other area school. At least one of these non-profits’ leader doesn’t advertise at Gallaudet because that leader assumes that a Deaf or HH student wouldn’t be able to communicate with the staff and the organization couldn’t afford an interpreter. In fact, Deaf and HH students’ needs vary greatly, free technology can address many communication gaps, and Gallaudet provides interpreters for at least some of a student’s intern hours free of charge to the non-profit. It’s much easier for a Deaf Gallaudet student to access internships in mainstream organizations than it is for a Deaf student at almost any other school, yet local organizations often don’t bother to look into it, letting assumptions rule the day. The same is true of other disabilities–there might be free community resources, a candidate might already own assistive technology or be able to suggest free or low-cost access solutions, or there might be a remote work solution available. It’s not the employee’s responsibility to know every answer, of course, but it does a disservice when employers just assume that access is impossible.

Universal design seems like a daunting concept to many, but it’s not that complicated.  We can look at simple principles used by small convention planners, for example, who set aside a self-care space or set a scent-free policy at the first stage of planning. Though the budget may be shoestring, when these considerations are made early on, as part of the entire planning process, they’re not that hard to implement and the benefits go far beyond people with disabilities.

Blogging Against Disablism Day: Rethinking Access

Over the past five months, my thoughts on access have shifted to such a degree that some friends wonder if I might be lying about how I experience the world.

Until this January, I never asked for access and I didn’t identify as Deaf or HoH.  When I did question the way I hear, I often dismissed my own concerns as lying to myself or being dramatic.  It’s hard to know, after all, how you hear relative to others.  I frequently make “silly mistakes” in interpreting another person’s words, and these mistakes have always been an embarrassment.  I’ve always hated phones.  I do a lot of “filling in” that I don’t really think about to get the full meaning of a sentence, and I hadn’t really noticed how that differs from others’ experiences.

It wasn’t until a conference in January that I considered asking for PSE (ASL signs in English word order, basically) interpretation.  I felt like such a fraud asking, and every other word/sign in my request was an apology.  Even as witnessed how much of a difference it made for my ability to understand without strain and frustration, I felt guilty.

One interpreter, though, said something that resonated with me.  He said that it doesn’t matter what your disability is, or even whether you have one.  You don’t need a diagnosis.  If interpreters give you greater access, and improve your experience, you have a right to request them.

I can’t say that my feelings on the issue have magically reversed in five months. I still ask myself if my hearing issues are “real,” or “enough” to ask for help.  I suspect I have an auditory processing disorder, and I feel fraudulent when I identify as HoH as a shorthand.  I don’t want to minimize anyone’s Deaf identity by using terms that imply a more difficult experience than I have.  But I have been learning to ask for access, to request interpreters without fretting over the cost to event organizers and to ask for friends to repeat themselves when I don’t understand.  I’ve also been attending Deaf events whenever I can, to surround myself with people who don’t see ASL as a “language of the disabled.”

One of the hardest things I’ve had to do, but one of the most important I think to fighting ableist attitudes, is to demand access and not accept excuses.  When an organizer says “no,” “it costs too much,” or “we can’t find interpreters,” I’m training myself to challenge that attitude and confront organizers about their hypocrisy as social justice activists.  I’m learning to stop myself from saying “it’s okay, I understand, I can hear enough to follow” and to instead explain that my access is limited and I’m getting less out of the event I paid for than other attendees.  Who knows what effect these protests will have in the future, but my hope is that they will raise at least some awareness.

This post is for the Blogging Against Disablism Day 2012 event.  Follow the link to read all the posts.

Intersex Athletes and the Intersection Between “Abnormal” Gender and Disability

A couple of weeks ago, I was somewhat perturbed by a discussion of intersex athletes competing in women’s sports.  The discussion took place on a National LGBT Bar Association call on intersex conditions and the law, generally, but it was the information on sports that I found most bothersome.  I’ve been thinking about the frameworks in which we approach trans identities and disability, finding interesting parallels, and the same is evident for intersex individuals.  In the context of women’s sports, athletes who live and identify as women can be disqualified for intersex conditions because they are thought to have an unfair advantage over men.  However, the line in the sand is far from clear.

A couple of months ago, in a dialogue with my friend Kyla on Girl w/ Pen around the classification of gender identity disorder, I mentioned the case of athletes with prosthetic legs being disqualified due to their “unnatural advantage.  In that post, I concluded that the distinction of “unnatural” vs. “natural” wasn’t as obvious as it might seem.  Other extreme body differences, for example being a very tall female basketball player or a very short gymnast, are not considered unnatural or unfair.  The basketball example was also mentioned on the intersex call, in explaining the use of androgen counts to determine who has an “unfair” advantage.

In women’s sports, chromosome tests are no longer used to determine gender, but androgen tests are.  The idea is that having more androgens does positively impact athletic performance, so it’s not fair to have athletes with “too many” androgens compete against women.  Of course, these athletes don’t compete against men, either.  At the same time, athletes with unusual height, lung capacity, or other advantages are seen as “fair” and “natural.”

This says a lot about the way we view gender, and the way we set norms.  We separate athletes by gender because, on average, male athletes and female athletes have certain differences.  But at the same time, there are huge variations within those two genders, so that a perfectly “even” or “fair” match would be difficult to find.  And really, why would we try?  If the point of high-level sports is to work to be the athlete with the most prowess, someone has to be better.  Many young people would love to play sports at that level, but their bodies don’t allow them.  We’re used to this idea.

What we say to intersex athletes when we do tests like this is that there is some line that divides the “normal” from the abnormal.  Folks with a certain number of androgens, like those who conform with their assumed gender, like those who have talents within a socially “acceptable range,” like those who run with legs made of muscle and bone rather than manufactured parts, are considered valid athletes and valid human beings.  Those who fall outside the range don’t get to compete.

It’s not just intersex athletes to whom this restriction applies, by the way.  My ears pricked when I heard that androgens were being used as the deciding factor, because I happen to have a hormonal condition that affects my own hormone levels and I do not have an intersex condition.  I asked whether women with PCOS, for example, who might have elevated androgen levels, but would not be considered to have an intersex condition, could be disqualified on that basis.  The answer is yes.  I’ll leave you to mull these thoughts over with me, and please do comment if you have anything to share on this topic!

Love Your Body Day: Complex Body Relationships

This post is part of the 2011 Love Your Body Day Blog Carnival

As feminists share tips, stories, and body love today, I am pleased to see that some are also highlighting the negatives of the body-love imperative.  While fighting body-negative messages is crucial, it is important to recognize that the goal should be acceptance of others’ bodies, not unqualified love of one’s own.  For many people, including transgender, genderqueer, and intersect people, people with disabilities, people with a history of eating disorders, and those with a history of sexual assault, body love may not be a comfortable or appropriate goal.  It’s important to realize that for some of us, a body is an inconvenience or a hindrance, and that experience is just as valid as body-love.  

So what tips would I share on Love Your Body Day?

1.  Speak to others in a thoughtful, compassionate way about bodies.  Recognize that people’s relationships with their bodies vary widely and respect that.  Don’t speak in absolute terms or offer advice when it’s not wanted or needed.  For example, don’t sing the praises of exercise–many feel that while it’s wrong to criticize someone’s weight, exercise is right for everyone, and that simply isn’t true.

2.  Be gentle with yourself if you have difficulty with body-love.  Sometimes our bodies are disappointing.  They might not function how we’d like them to.  It might be hard to gain or lose weight.  We might have health problems we can’t control, or a body that doesn’t feel right for our gender.  If nurturing your body isn’t appropriate for you, try nurturing your mind or your spirit.  A lot of body issues are mental health issues, and it can help to have a safe space to talk those out, even if they aren’t “fixable.”

3) Look for and give support where you can.  It might be helpful to share experiences with others who have similar body issues.  This doesn’t have to be a formal support group–I’ve seen plenty of this on Twitter and Tumblr.

4) Think of ways to visualize yourself or express your creative spirit–this doesn’t necessarily have to involve your body.  For example, you might design an avatar or a work of art to represent you, make a spirit wall, practice creative visualization to envision yourself in some way other than the embodied, or use fashion to cover your body or make it less noticeable than what you’re displaying on it.

5) Assert your right (and others’) to take up space in a way that works for you.  It’s okay to say that your body fucking sucks.  You have a right to be sad, hurt, or angry.  Anyone who insists that you love your body, get over your issues, or make more of an effort to love yourself is practicing emotional abuse.  You have a right to inhabit physical space as well.  You have a right to accommodations that you need.  You have a right to say no to anything that makes you uncomfortable.  You have a right to tell others not to say things about your body that they think are positive, and not to touch your body.  These are all parts of bodily autonomy.

Mental Health, Stigma, and Activism

This post has sort of been a long time coming, but it’s a challenge to gather my thoughts on what I’d like to discuss here.   For a long time, my identity has been heavily organized around sexuality and gender.  That’s where most of my activism goes, as well as most of my writing and academic work.  I’m sensitive to gender- and sexuality-based discrimination in my own life and in the lives of others.  But lately, I’ve been thinking about another kind of discrimination, and another kind of identity–one that it’s much scarier to claim.

I spend some of my blog-reading time each day on disability, a topic that’s of interest to me because it falls in with so many other oppression- and kyriarchy-related topics, because I don’t know enough about it, and because it affects so many of those near and dear to me.  I am a TAB (temporarily able-bodied) person, and so I have never really identified with disability, but that has been changing.

None of these things are diagnosed, partially because of the challenges in seeking professional assistance and the potential of community rejection, but I show pretty strong signs of depression, anxiety, social anxiety, and binge eating disorder.  I had to fight my urge, just now, to put the adjective “mild” in front of those words, because the stigma against them is so heavy, and I can practically see the judgment coming.

I’ve judged other people for their mental health problems.  I’ve used words like “crazy” to describe people, and as a brightline rule to apply to myself–“I may have some issues, but I’m not crazy.”  I’m ashamed to admit that.  By some definitions, I probably am crazy.

The fact is, normal is relative.

We live in a world that encourages mental unhealth.  Just sorting through the challenge of trying to find a good eating disorder recovery blog that is body-positive, supports HAES, and doesn’t use the language of control and oppression and restriction, is really tough.  That’s because we’re taught that it’s healthy to hate our bodies, healthy to restrict our eating, and if food controls our lives, it has to do with weakness and willpower and personal responsibility.  Similarly, anxiety is normal in a stressed-out world, as is depression.  Those things are “just what everyone has,” but if someone asserts that it actually is a problem, it actually is greater than normal, zie becomes stigmatized, unhealthy, crazy.

I’m tired of guilt.  I’m tired of all the fucked-up issues I have surrounding food and money.  I’m tired of feeling the burden of the constant pressure to maintain a reputation, an online presence.  I would love to write and be an activist for a living, but it’s not a profession that cuts people very much slack.  There’s pressure to constantly produce, not to have an “off” day.  There’s pressure to be able to be social and travel and do things whether or not you feel like it.  There’s pressure to present as healthy, calm, with it, in control.  Of course, there’s very little money in it, so it’s not a very welcoming place for folks whose mental health issues are exacerbated by not having enough.

I’m not going anywhere.  But I am starting to learn and accept that I may not be cut out for this career, for activist “fame,” for material success.  I’m going to keep writing and keep reading and keep talking to people, but I’m going to accept that my periods of disappearance due to social anxiety may mean that I lose a lot of people and am never seen as a member of the community.  The time it takes to tackle my “issues” may take away from the time I have to tackle the world’s issues.  I may be seen as “less than,” “not good enough,” or “unprofessional” by some people and organizations.  I’m going to learn to be okay with that, because the guilt and the shame and the pain of a world that I visualize in constant judgment is too much for me.

I wanted to put this out there because I know I am not the only blogger, writer, or activist in this position.  I want to let you know that you’re not alone and your struggle is valid and the stigma against you is shit and it’s not your fault. I’m not sure I can offer a very reliable ear, because the pressure of correspondence is often difficult for me, but I can try.

How to Be an Activist Through Eliminating Hurtful Language

As a writer, blogger, and activist, I think I have a certain responsibility to think about how I express myself.  Whether I’m writing a post or an article, having a casual conversation, or replying to a Tweet, it’s easy to use language without thinking about it.  We all talk in the feminist and queer communities about how harmful societal norms are–whether it’s the pervasive use of “crazy” as a negative term, the way rape culture is subconsciously taught and accepted, or the societal pressure on women to be thin and “pretty.”  A lot of us end up with increased awareness of certain types of language through activist communities, and I love how this happens and very much encourage everyone to blog or just talk about terms you notice people using that support the kyriarchy.

Today, I want to talk about a particular group of words that I find harmful and am working to eliminate from my own speech.  The words I’m thinking of are associated with the garbage–from words that describe what we take in (“junk food,” “trashy books”) to words that describe what we are (“trailer trash,” “sloppy seconds”).  These words, in my experience, tend to apply primarily or only to things that are associated with poverty or “low” culture.  When a middle or upper class person talks about things in the first category, it’s common to speak of guilty pleasures and indulgences–“I know I shouldn’t eat so much junk food; I’m putting trash in my body but it’s just so good.”  This kind of language implies that 1) we should be guilty about things that are labelled “trash” and 2) these are a temporary deviation for middle and upper class people, ultimately linked to individual responsibility.

I could go on for days about what’s wrong with the way we talk about individual responsibility in Western capitalist countries, but to stick to my main point, what sucks about this kind of language is that it implies that people who consume such things should be guilty, and further that they are bad people because of what they consume.  It’s not a big leap from “junk food” and “trashy magazines” to trailer trash, or from saying someone’s clothes are trashy to saying that she is trashy.

Elitism is easy not to notice when you’re raised to value education, health, etc. and to look down on “guilty” or “nasty” habits.  I know I tend to talk a lot about “guilty pleasures” or be embarrassed about certain books or music.  So here’s a challenge to those of us who were raised in that environment, or for whatever reason find ourselves boxing habits into “good” and “bad” categories.  Let’s try to think about these problems when we’re writing, and especially not to use words like “junk” or “trash” to describe habits or people. Also, let’s try to avoid the trap of talking about how people are “victims of their environments” or using the language of pity when talking about access to education and culture.  This kind of language assumes that culture has an innate value, that people who don’t have access to “high” music, literature, food, or clothing are stuck with “low” forms.  It ignores the inherent value of these things and ascribes unnecessary guilt to their consumption.  Taste is a matter of individual preference, so let’s all make an effort to stop demonizing others’ tastes and start questioning the origins of our own.

Roundup: First Blog Carnival on Privilege

Welcome to the First Blog Carnival on Privilege!  First, thanks to all the bloggers who contributed to this first round of the carnival.  I was excited to see all the different takes on privilege represented here, and the diversity of those who submitted.  You can see all the entries below the cut, and follow links through to read the complete posts.  I also want to announce that we will be having a second carnival, since this first round was so successful.  To give everyone plenty of time to think about submissions, the second carnival entries will be due Sunday, May 23rd.  The topic for the second carnival will be White Privilege, so start thinking about race and racism for your posts.  I would also accept posts for the second carnival that deal with other sorts of racial privilege, for example if you want to write about a community where one group is privileged based on the color of their skin, but that group isn’t “white,” that’s perfectly fine.  Submissions again can be e-mailed to judithavory [at] gmail [dot] com.  If we get a lot of submissions again, then I’ll probably switch over to a monthly format, and perhaps ask for other hosts for future carnivals.  Also, because this came up a couple of times in this round, I do prefer new posts, but if you want to submit an older post for a carnival and not rehash an issue, that’s also fine.

And now, on with the carnival!