Category Archives: (dis)ability
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.”
All right, y’all, it’s confession time. While I’ve never found it super easy to be consistent in my writing and activism, the past year has been especially hard. I’ve struggled with extremely low energy, sometimes sleeping as many as 16 out of 24 hours in a day, and rarely fewer than 11-12. I was always a big sleeper, but this is getting ridiculous. One day, my roommate said to me “God, if I slept as much as you do, I’d never get anything done!” and a lightbulb clicked. Not only is low energy a legit medical issue, but it’s also pretty disabling.
Even when I’m in a healthier place, I have trouble getting everything done. I live a fairly typical millennial existence of FOMO, decision fatigue, and constantly rebooting my productivity processes to optimize, optimize, optimize. I came to terms a few years ago with the fact that activism was never going to be my full-time gig, but I’m still holding on to a lot of guilt when promises come in late or not at all, e-mails go unanswered, and my TBR shelf remains very solidly TBR.
This week my labs came back and I found out that I am very B-12 deficient and also a little D deficient. I don’t know yet if supplements will be the magical pill that cures everything, but of course I quickly started dreaming about what it would be like to have more time in my day. Time to check items off my to-do list, but also time to do silly things, to watch TV, to read books. That said, even if I get a few hours back in my life, it doesn’t change the underlying fact that I feel guilty when I don’t do things. And why, really?
Yesterday, I nearly had a breakdown when I realized that I’d let my feed reader go unchecked long enough that some items are gone and unrecoverable. Noooo! What if that blog post held the meaning of the universe, life, and everything? (Say it with me now.) But then today, I looked at my much-shorter unread count and actually read the articles. And I was done. And while there’s still a lingering desire to punish myself for losing something forever due to slacking off, it’s also nice to see that empty queue. And maybe it’s okay, just like every time I e-mail someone apologetically after radio silence, they tell me that it’s perfectly okay. Okay? Is it okay to be okay? I think it might be. So this isn’t an apology for the sporadic nature of my contributions of the Internet, but more some thoughts and feelings to put out there about spoons, disability, and the nature of communication. If you’re feeling the same way? I give you permission to release as much as that guilt as you can. You’re okay too.
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.
Greetings. It’s time for a somewhat odd end-of-year post, but bear with me. As anyone sticking around here can tell, I’ve been struggling for years to update this blog regularly. I’ve considered writing about the process many times, because I think it’s important to talk about mental health and capacity in activist communities, but it’s also tough to put myself out there and be vulnerable about my own mental health. I wanted to speak up today, though, while I’m in a particularly introspective place with regard to my mental health, have a good support structure to back me up, and have been reading some really thought-provoking work that’s made me think about how we rate our own “issues” as serious, or not serious, “enough.”
The posts I’ll reference here have very little to do with one another, at first glance. One is about executive function, another about sex-negative feminism, and the third about strategizing when to “call in.” The common thread, though, is that all three got me thinking about things in my life that often seem too “mild” or trivial to focus on or use as justification for behavior. And this is a thread that’s been incredibly prevalent and challenging for me in my attempts to practice self-care.
This post is the final one in a four-part series on polyamory, healing, and societal wounds. Start with part one.
This post is something of a footnote or a wrap-up to the Poly in Practice series. We started with talking about equity vs. equality in poly, then moved on to how capitalism fucks us all up, and then in the last post talked about some of the particular challenges of healing from past relationship trauma. Now, I want to come back to a theme I only briefly touched on in posts two and four: how we might tie disability justice ideas, and specifically the concept of universal access, in with practicing polyamory.
Really, ableism runs throughout this topic, and throughout the models of poly I’ve been challenging as too limiting in this series. The concept of equality is often applied in ableist ways, as is capitalism. Disability justice reminds us the playing field is not, in fact, level. Not everyone can reach the same milestone of equality by pulling on their bootstraps—nor should they. The concept of universal access suggests that the solution, however, isn’t necessarily trying to level the playing field by changing the milestone for people with disabilities, or helping with the bootstrap-pulling through charity or medical advances. Instead, entire systems can be designed from the ground up to be accessible to everyone—whether we’re thinking about architecture, communications infrastructure, or even relationship models.
Universal access focuses not on the “person with disabilities,” but on the range of ways in which people work, live, move, and communicate. Rather than “accommodating” one person or group of people, this model looks at how everyone can benefit from a broader definition of accessibility. Here, I’m thus going to make an effort to apply the idea of universal access to love—focusing on how poly communities can radically change the way we look at love and access to love with a focus on community growth rather than individual relationship challenges.
It’s been a while since I updated Radically Queer, and that’s mostly because I started a new job as a database manager in August. The job has been excellent so far, and one of the professional development opportunities I’d been most looking forward to as a part of it was Dreamforce 2014, a huge conference for Salesforce users taking place in San Francisco last week. Like my fellow nearly 150,000 attendees, I arrived to San Francisco excited to learn about better ways to use the platform and the new features Salesforce will be offering in the coming year. I was caught up in the enthusiasm of all the huge blue signs and volunteers stationed throughout the Financial District to make it easy for us to register and start the conference. But my experience went downhill pretty quickly Monday morning.
This being such a big, professionally organized conference, my expectations around language accessibility were high. I was a little surprised not to find any obvious accessibility request language or procedures on the main Dreamforce page, but a month or two before the conference I posted a question about ASL interpretation in one of the Dreamforce-related Success Community groups and a Salesforce staff member directed me to the events company managing the conference. The rep replied to my email with one question about keynotes and otherwise, I figured everything was handled. I’d registered very early for a couple of sessions a day, focusing on what I most needed to learn, to make sure it would be easy to provide interpreter coverage for me for the event. But when I arrived at my first session on Monday, I was surprised to find that no interpreter was present. The folks manning the door were also not able to provide me seating up-front, as the session had filled up and I could only sit in the middle of the huge room. I knew I wouldn’t get anything out of the session, so I left.
Later, I Tweeted my disappointment, including the @dreamforce handle, and I did get a quick reply asking for my contact information and offering a follow-up. I was told to expect contact from a particular representative, who didn’t contact me by the end of the day, so I tried again with a DM through Twitter. I received a call on my cell phone, which I couldn’t answer in the loud conference environment, but later received a text and figured out from the matching number that the Salesforce rep had tried to call me to set up an interpreter. We were able to coordinate through text and e-mail and I did get an interpreter for the one remaining Wednesday session that I really wanted to attend. Once the interpreter was scheduled, the staff did very well day-of–the door staff knew to expect me, made sure I was understanding/lip-reading, and told me the interpreter was present. A member of the event company escorted me inside and told me to sit anywhere, and I met the interpreter, who was great. I just wish this service had been available for the Monday and Tuesday sessions.
For the Dreamforce team, this experience should provide several cues for next year. I hope they’ll learn from their mistakes and that I will be able to access the conference fully. I know that I’ll be hesitant to register unless I have a very firm commitment from Dreamforce around ASL interpretation!
- Give attendees an easy way to make accessibility requests. This would be simple to do both on the registration page, with a link on the main event page, and/or with a way to make requests in the Agenda Builder. A clear policy on accommodations offered would also be great to read on the Dreamforce site before the conference.
- Reserve seating up front for those with accessibility needs. Many of these sessions have huge rooms, so it would be great to know that I could sit up front (at least for any sessions I registered for in advance) to facilitate lipreading if an interpreter wasn’t available. While it’s the best policy to always provide interpreters upon request for full access, this is a good option to provide as a next-best accommodation.
- Confirm interpreter availability before the conference and offer a refund if interpreters are not available. If interpreters are requested and not available, attendees should know and have an opportunity to attend. While I got some value out of Dreamforce, it was greatly reduced and I would’ve appreciated knowing in advance that my request couldn’t be honored and having the option to cancel my trip. Or, if interpreters would only be available for certain times, I would have selected sessions in accordance with that availability.
- Train staff in how to work with Deaf and hard-of-hearing attendees. Dreamforce is not the only culprit on this one, and it always saddens me because it would be such an easy fix. Let volunteers and staff know that there may be Deaf and hard-of-hearing attendees present and particularly if someone identifies themselves as such, it’s important to speak clearly and face the individual in question. Staff should use text-based communication (SMS, e-mail, Twitter) to communicate with the attendee when necessary unless an attendee affirmatively says that he/she/they can use the phone/have an interpreted line.
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.
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.
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!