Follow Friday: Disability Blog Edition for May 28th

If you do the Twitter thing, you are probably familiar with the #followfriday (or #ff) phenomenon, where you recommend other people on Twitter to “follow”. This is a lot like recommending friends “you may know” on Facebook. The social media guide Mashable.com explains more:

#followfriday is a game in which people suggest who to follow on Twitter. It helps everyone find interesting Twitter users. You list the users you recommend following and add “#followfriday” anywhere in the Tweet so others can find it. The “#” is very important – don’t forget it!

This week, I recommended several self-identified women with disabilities for #followfriday. You can see my selections here and here.

In addition to recommending women to follow on Twitter, I’m going to start highlighting women who blog about their disabilities with a little link love. Let’s get started!

Beyond Passing Time: Wimpy Tries to Live with it

To begin with, I didn’t even know my heart was chronically fast — sometimes dangerously — when I was diagnosed with this problem six years ago. In grade eleven and twelve, doctors had noted that it was fast a couple of times, but it was written off as a side effect of extra Ventolin inhaler puffs before a pulmonary function test and another time, as part of a fever when I was in the hospital. I just assumed my heart was just a bit touchy — that’s all.

Brilliant Mind Broken Body: The late night breaks are the hardest

I don’t want my hands covered in silver braces that people will stare at and ask about. Bad enough that they feel no shame about asking me why I need a mobility aid – whether it’s my service dog or, in the past, crutches and canes. But to have them querying me about a set of braces that will ruin the slim, clean lines of my hands is particularly hard.

Life, Paralyzed: Slacker

Most recently, I’ve been getting a throbbing pain all through my back, especially in my lower back. It’s all very odd and frustrating, because I can’t feel the exterior; I only feel the interior. Could I really be feeling my bones and muscles? I doubt it. Regardless, I’ve had all kinds of tests done in hopes of finding a cause and haven’t had any luck. All my major organs are fine. My breathing is good and my blood work is fine. That leaves me with, “it could be stress or neurological pain.” Great.

That’s it for this week. Have a great weekend, y’all!

Medicaid Reimbursement Rates Are a Feminist Issue

I generally try not to say anything negative about specific doctors, clinics or hospitals in any printed format, including online, because let’s face it: those folks have better lawyers than I do and they could sue the pants off of me, even though every word I’ve said is true (to the best of my knowledge and recollection).

Still, l had something happen at a doctor’s appointment recently that I think needs to be talked about. It doesn’t matter who the doctor was or where the clinic was. It doesn’t even matter whether the doctor was a man or a woman. It’s a long story, but I was treated very poorly and I actually walked out of the appointment. The doctor was rude, abrasive and extremely condescending. S/he acted as if s/he didn’t want to treat me, as if my case was too complicated and time consuming.

I believe I was discriminated against because I have Medicaid for my health insurance. After I left, I couldn’t figure out why a doctor would treat a patient that badly and the best explanation I can come up with is that s/he wasn’t getting paid enough to make my case worth her/his time and energy.

In other words, the Medicaid reimbursement rates in our area must be pretty low and if a doctor is driven by profit, taking a case like mine would not be cost-effective. This concerns me, not just on a personal level, but on a national level as well. 1 in 10 women receives her health coverage through Medicaid. For low-income women, this statistic is even higher: 1 in 5 women have Medicaid. These numbers are only expected to rise as approximately 17 million people will be enrolled in Medicaid as health care reform is enacted over the new few years.

Increasing Medicaid enrollment without boosting doctors’ reimbursement rates leaves poor and disabled women open to discrimination and abuse.

I worry that even if a doctor does accept patients with Medicaid, some patients with complicated cases will be turned away by doctors who don’t want to treat them. If they are lucky enough to find a doctor, they may be forced to accept substandard care or facilities. During the health care debate last winter, Sen. Lamar Alexander (R-TN) called Medicaid:

a medical ghetto called Medicaid that none of us, or any of our families, would ever want to be a part of for our health care.”
I thought he was exaggerating and took the senator to task on my blog. As time went by, I realized that while I have had really excellent care and providers, others may not be so lucky.

After thinking about it, I can see that I’ve had the best experiences with Medicaid providers who were part of large clinics and/or hospitals. It always seems to be the independent contractors – the little guys and gals at private clinics – who either refuse to treat me or have a lousy bedside manner when they do.

The Department of Health and Human Services (HHS) even admits that it doesn’t pay for some doctors to take the cheap Medicaid patients on:

Medicaid payment is often very low. Low payment rates discourage provider participation in Medicaid… Rural areas usually do not have sufficient patients to fully support a doctor’s practice.

The HHS website I linked above goes on to list suggestions for how the Health Resources and Services Administration can use Medicaid funding to improve rural health care for Medicaid patients but at the end of the day, money talks: Congress will have to increase the reimbursement rates so doctors can afford to treat Medicaid patients. As feminists, we need to push Congress to do this so women and girls on Medicaid (and Medicare) receive the best health care possible.

Driving home from that doctor’s appointment a few weeks ago, I was angry and upset, not only for me but also for the millions of other women who are currently on Medicaid or will be soon. Regardless of our income level or what insurance we have, we all deserve dignity, respect and first-class health care.

Action, Not Words: Bridging Divide Between Feminism and Disability Rights

So, I’m back. The website was down for a while as I transitioned to a web server and got everything all spiffy-looking. Do you like it? The pink cosmo in the header is actually from my very own garden. (Yes, I am shamelessly begging for compliments.)

While I was offline, I’ve been thinking about where I want this blog to go and what kind of activism I want to be doing. I am a feminist and will always write about and fight for women’s rights. I am also a woman with multiple disabilities and I have started to shift my energies into fighting for disability rights. However, as time has gone by, it seems downright silly to me that disability rights are not a core element of the feminist movement. According to the Centers for Disease Control and Prevention (CDC), as many as 1 in 5 women in the United States are living with disabilities. Surely an issue that affects 20% of U.S. women is a feminist cause, right?

Well, not really. Disability rights and feminism have historically been separate movements and it’s time to change that.

While other feminists with disabilities have tried to end discrimination and harassment of people with disabilities by focusing primarily on ableist language and privilege, I believe we need to think bigger.

I subscribe to the social model of disability:

The social model of disability, on the other hand, sees disability as a socially created problem and not at all an attribute of an individual. On the social model, disability demands a political response, since the problem is created by an unaccommodating physical environment brought about by attitudes and other features of the social environment.

What this means is that although I may have a hearing impairment (among other things), it is not what disables me. My hearing loss in itself is not what keeps me from fully participating in society. Instead, I am disabled and left on the sidelines of society because there are:

  • too many jobs that depend on being able to hear and listen, such as simply being able to return phone calls on a regular basis (I don’t always hear well on the phone, especially if I have to take down information)
  • too many restaurants, stores, theaters, auditoriums, churches, and other public spaces with background noise and bad acoustics that make it difficult to socialize, network and simply be with people
  • too many unintelligible PA systems in stores, airports, subways, airplanes, and public and private buildings of every sort that provide relevant and important information (I freak out a little on planes every time the flight attendants come on over the PA and I can’t understand a word they’re saying. Are they saying something I need to know, something safety-related, or are they just announcing they’ll be coming along with the drinks cart?)
  • too many teachers and professors who don’t talk loud enough, fail to provide written notes/outlines/PowerPoints so I can follow along or simply just talk to the black/white board

Those are just a few of the ways I am disabled by my hearing loss according to the social model of disability. As feminists, I think we need to be doing more to support our sisters with disabilities. Temporarily able-bodied (TAB) feminists need to join the fight to help women with disabilities secure our rights in the following areas:

  • Health care (including reproductive rights)
  • Education
  • Economic rights
  • Sexual assault and domestic violence
  • LGBT issues
  • Immigration
  • Social Security
  • Women in the military and women veterans
  • Employment

This is not an all-inclusive list and I am 100% positive I have forgotten some very important issues. I apologize for that in advance. Also, it goes without saying that all of these issues must be viewed through a multi-racial, multi-ethnic lens. Being disabled is not just about white, middle-class women. It is just about ‘American’ women, either. While I will probably focus more on North American women, disability is an international issue and we need to be mindful of that.

In the coming days, weeks and months, I plan to talk more about all of these things. I hope you’ll join in the conversation.

National Women's (Disability) History Month: Alicia Alonso

Alicia AlonsoAlicia Alonso is a Cuban prima ballerina and choreographer, best known for her portrayals of Gisele and Carmen. She was born in Havana, Cuba, in 1921 and began dancing at an early age, first in Havana at the Ballet School of the Pro-Art Musical Society in 1931. After marrying Fernando Alonso, they moved to New York City where Alicia studied with Anatole Vilzak and Ludmilla Shollar at the School of American Ballet. During this time, she also studied with Vera Volkova in London.

In 1938, Alonso made her Broadway debut in the musicals Great Lady in 1938 and Stars in Your Eyes in 1939. Early in her career, probably about the time, Alonso began experiencing problems with her vision and became partially blind. She continued to dance, by adapting to her impairment:

Her partners always had to be in the exact place she expected them to be, and she used lights in different parts of the stage to guide her. Her handicap was totally unnoticed by the audiences.

Throughout the 1940s and 1950s, Alonso danced in New York, London, Paris, Havana, Russia and Monte Carlo. She is most famous for her iconic portrayal of Giselle in 1943.

Alonso founded the Alicia Alonso Ballet in 1948 in Havana which later became the Cuban National Ballet. After Fidel Castro came to power in 1959, Alonso returned to Cuba permanently and became director of the Cuban National Ballet, a position she holds to this day.

Watch Alicia Alonso performing Giselle with Vladimir Vasiliev and Ballet Nacional de Cuba (1981?)

Learn more about Alicia Alonso::

Photo credit: Library of Congress

Women Living with Disability: Monica

Name: Monica Foster
Bio: Monica is a Life Beyond Limits Coach for veterans and others with disabilities. She is Chief Motivational Officer for BUTTERFLYWHEEL Motivation Advocacy & Consulting where she also writes, speaks and presents disability awareness trainings
Website: http://www.butterflywheel.com

1. What is your disability or chronic medical condition? How does it affect you both generally and on a daily basis?

I have spina bifida from birth and am a recent left above knee amputee due to a life-threatening infection in my left leg that began as a non-healing pressure sore in my left foot. I am a full-time wheelchair user, but I am full steam ahead independent. I drive both an adapted car with wheelchair topper and full-size adapted van.

2. Do you consider yourself “disabled”? Do other people see you as “disabled”?

I’m a vibrant, independent woman on wheels. My husband and those who know and love me see me as a whole person. What others think doesn’t matter all that much, but I thrive on widening open minds and cracking open closed ones in terms of how they view disability

3. Do people treat you differently or unfairly because of your disability/condition? How so? Can you give an example(s)?

I have been talked down to like I’m a child. I’ve been spoken to loudly as if I had a hearing impairment. My legs don’t work. My ears are just fine. I have been told I was just too darn pretty to be in a wheelchair as if the wheelchair marred my appearance. I don’t think the wheels detract from my appearance at all. My disability is just another part of me like my hair color, eye color, height and other natural attributes. My husband and I are sometimes looked at as if we both have a disability because the obvious misconception is that only people with disabilities want to be with others with disabilities. He’s also been complimented for “taking care of me” when we have a 50-50 marriage. I take care of him in my own way, as he does me. I’ve been complimented that it’s so wonderful that I found a man as if my wheelchair were a deterent to finding a life mate.

4. If you could tell the world one thing about what it’s like to live with your disability/condition, what would it be?

I would have to say that living with a disability is like any other life situation we adapt ourselves to. We adapt to job changes, life changes and relationship changes. That’s what humans were made to do, to adapt. I’m not saying having a disability is the easiest thing in the world to adapt to if it’s a new experience for you, but if you turn off the negative self-talk and the negative misperceptions of society and just take it moment by moment, you’ll be surprised just how well you can live and how much of the world you are able to experience. Do we still have a ways to go in terms of civil rights and accessibility, as well as people’s misperceptions about what we can or cannot achieve? Of course we do! But we also have a ways to go in learning to accept ourselves as whole people in our own right. It starts inside ourselves before we can teach others around us that we are worthy and able.

5. What do you like about living with your disability/condition?

I love that my disability affords people the opportunity to start a conversation about how I get around in the world, about civil rights and accessibility issues. I enjoy the opportunity to turn well-meaning, but wrong comments into a way to teach people the right way to perceive people with disabilities…as people just like them, who happen to maybe go about things in life a little bit differently than they do. We want the same things in all facets of life, but it may take a little creativity and a different method to achieve our goals.

"disability chic"

Yesterday Jezebel posted a link to this photo from Los Angeles Times magazine interview with actress Emily Blunt. In the photograph, Blunt is dressed in a beige minidress and tights, covered in beige makeup and poses against a beige, nondescript background. Her hair is pulled back and covered, as it she’s had a head injury. Her dress almost looks like a very glamorous ace bandage. Still, the most controversial thing about this photograph is, as Jezebel puts it, that the “crutches are accessories”.

I read the article from the LA Times and it appears the photograph was used as a metaphor for the vulnerability and brokenness of the characters Blunt has chosen to portray.

I have conflicting feelings about this. On the one hand, crutches are not only used by people with broken legs but also permanent disabilities. I don’t really have a problem with using disability as a metaphor. Our bodies break down and many people can relate to that. If it is done with sensitivity, I think disability as a metaphor has a potential to be very powerful.

However, notice I used the word “sensitivity”. The problem with this photo shoot is that Emily Blunt can take her makeup and costume off. She can toss the crutches and walk away. The photograph conveys vulnerability very well. As a piece of art, it succeeds. People who don’t live in photographs can’t throw their crutches away. They still have to live with limited mobility, pain, medical problems, etc.

Jezebel used the term “disability chic”, linking to other instances with Helmut Newton and Lady Gaga. I appreciate the right of artists to use disability in their work. Disability is a part of life. Still, sometimes it is not done right, disability as metaphor can come off as mocking people with disabilities. Emily’s photograph in the LA Times feels like this to me.

I wouldn’t use the word “chic” to describe disability. People with disabilities can be chic, of course but disability itself? I don’t think so. Disability can be beautiful, triumphant, brutal, scary, boring, lonely, horrific, peaceful and much, much more. Commercializing disability, as Lady Gaga did in her video by blinging-out her wheelchair, further minimizes the experience of people with disabilities.

Disability isn’t an accessory you can buy at the store. It isn’t disposable, like Gaga’s latest Gucci handbag. When you live with disability, you are usually stuck with it. You can’t take it off end of the day or throw it away when you get sick of it.

At the end of the day, that’s what irritates the most about Emily Blunt’s photograph. I know that when she was done with the photo shoot, she took off her costume, put down the crutches and walked away without any difficulty.

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Women with Disabilities: Wheelchair Dancer

wing2

Name: Wheelchair Dancer

Bio: A displaced Brit, WCD lives part time in New York City and San Francisco Bay Area; she dances for a physically integrated dance company. Her blog can be found at http://cripwheels.blogspot.com and you can follow her on twitter at http://www.twitter.com/wheelchairdancr

1. What is your disability or chronic medical condition? How does it affect you both generally and on a daily basis?

It interests me that we continue to ask this question of each other. Even as we blog, write, talk about how annoyed we are when we meet people on the street whose first question this is, we continue to measure, approve, classify, recognize each other by the medical classifications of our bodies. Why? I wonder whether there’s a better way to identify ourselves to each other, to signal that, yes, we belong to each other. I wonder if there’s an inherent feeling of privilege here — that somehow disabled people get to ask these questions of each other, because, well, we’re disabled. Is the information learned so necessary that without it we cannot build relationships? Does knowing that you are an acquired C-6 versus a “from birth” or even an acquired T-1 matter? Can we only “identify” and “relate” if we know the medical details of our histories? Yes, there’s a difference between being a high-quad and a low-para, but is that difference material if you believe people are available and accessible in more ways than, “I know what you’re going through only because I went through exactly the same experience myself.” I believe it is important to share experiences and that can sometimes include sharing medical histories, but I also believe that using a medical history as a kind of shortcut to identifying with and understanding our lived experiences abrogates our ability to understand and relate to each other.

I also think that within the disability community there are “prestige” diagnoses — I think, for example, of the way wheelchair users are prioritized both in terms of discussions of access and in terms of symbolizing the community. I also think that wheelchair users all too frequently tend to operate around a separate but different hierarchy that seeks to delegitimate the rights non-SCI users of wheelchairs. The negative sides of the conversation that I have heard contain things like “if you can walk, you don’t need a wheelchair,” “people who use scooters aren’t real wheelchair users and shouldn’t have access to funding for them under Medicare or any other kind of public funding,” and “aging-related mobility impairments aren’t real disabilities.”

Gosh. I seem to have backed myself into a corner. I can hardly start to answer the question now, can I? I rather like the second part. How it affects me on a daily basis. I use a wheelchair for most of my mobility; I have involuntary movement, hypermobilility and joint instability, some pretty nasty spasms, and a fair amount of pain. And yet, I am not sure what the question asks — it certainly leaves room for freedom of response. Am I affected? Usually, we use “affected” in some kind of negative way. I wouldn’t use it to describe myself outside the disability community for fear of conveying a sense of suffering and blight. But, in a more neutral sense, yes, there have been some significant changes in my life.

2. Do you consider yourself “disabled”? Do other people see you as “disabled”?

That all depends on who you are and what you mean by disabled. I consider myself disabled; I use the term to indicate a mobility impairment and, through that impairment, my affinity and affiliation with the culture, history, and traditions associated with (but not necessarily begun by) the disability rights movement. It’s also an identity term. I am not sure how I would be read by, say, various legal and governmental entities for which the definition of disability is not being able to work. Disability outside the movement is so contextually defined. Does my doctor see me as disabled or does he just write prescriptions? How would I know? The army of people I work with on physical therapy, dance, training, etc? I don’t know — and I really mean that because so many of them subscribe to variations of the “we are all challenged” “you aren’t paralyzed and wheelchair-bound” takes on impairment. They all recognize that I am a dancer and that that means that I am an athlete. Does their notion of athlete also include disabled athlete? Does being seen as disabled depend on my wheelchair use? I kinda think so, at least for me. When I was using crutches more regularly, no one saw me as disabled. I was just someone who used crutches — knee surgery, dear? On the other hand, when I spazz out, passing is less of an option.

3. Do people treat you differently or unfairly because of your disability/condition? How so? Can you give an example(s)?

There’s a blog’s worth of writing on that topic. Most of the unfair stuff is pretty easy; it’s the same old disability prejudice, and my stories aren’t all that different from those of many other bloggers. More interesting (to me, at least) are the disability and race interactions. Yes, there is still racism out and about. We aren’t post-racial yet — the ways race and disability prejudice interact are endlessly fascinating. As a walking black woman, I’m a threat: I might steal something; I might be on welfare; I am most definitely staff (not a guest or client). As a wheelie, I am no threat. I am to be assisted, pitied, and helped through a difficult world. Or (and I love this one), I am doubly blighted. At any rate, no one is going to suspect me of stealing. The value and meaning of disability changes when I am in my community of folks because the disability identity that is most widely known is a white disability history and culture.

People certainly treat my differently. I am special (said bitterly but with a certain smugness as well). I don’t have to wait in line; people talk to me, make random conversation with me; flight attendants and other similar personnel chat to me more. People smile at my bravery when they pass me in the street… Urgk. Don’t get me started. I have to interact with more people in a wider variety of ways — I have neither the luxuries of passing or anonymity. I am always visible, always on, always performing some other person’s fantasy (in a prosaic psych sense, rather than sexual sense) of disability and race.

It’s complicated, and I am certainly not the most skilled at navigating all of the questions that come up because of disability. How do you handle it when a child stares at you? What are they looking at? If I am unfairly treated, is that a matter of race, disability, or both? How can I distinguish between these things? Is it worthwhile distinguishing? And if not, how can we work for justice and equality such that these questions are less and less meaningful to more and more people?

4. If you could tell the world one thing about what it’s like to live with your disability/condition, what would it be?

It’s work. It’s hard work. It can be very scary. It’s sometimes painful, often incomprehensible. You will try, fail, and try again. It can seem like a full time job that you have to do in addition to anything else you might want to do. You can do it; you will find your way.

5. What do you like about living with your disability/condition?

I’m not sure how to answer that. I like the life I have built; I am really happy with my career and beyond that dancing fills my soul. I appreciate the irony that I never would have had the chance to be a dancer if I hadn’t entered the world of disability. But I am not sure how to answer the question. I like the way I live, the people I have met, the grounding I have, the self-knowledge. I even like my wheelchair; that said, however, I don’t think I can say that I like what I live with.

6. Is there anything else you’d like to share?

Come and see me dance. Go and support disabled dancers in your area. Understand the freedom we dancers achieve by living maximally in our bodies. Go thou and do likewise — not the dance bit — just the living maximally bit. Oh yeah. And do your bit to make accessibility possible; when the world is open to more people in more ways, we are all able to be better humans.

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Women Living with Disabilities: Ashley

Note: Today’s Women Living with Disabilities interview is with Ashley. a twenty-three year old writer and post-graduate student who has a special interest in social health issues. You can read her blog, Beyond Passing Time. Today’s interview is notable in that it is personal: Ashley has hydrocephalus and Dandy Walker variant, part of Dandy Walker Syndrome, two inter-related and very serious conditions I also battle with on a daily basis. From the bottom of my heart, Ashley, thank you for sharing your story!

1. What is your disability or chronic medical condition? How does it affect you both generally and on a daily basis?

I have a Dandy Walker Variant (cerebellum malformation) and congenital hydrocephalus (I was born with excess fluid on my brain). The effects of the DWV have been more pronounced since I got sick last June. This condition affects my balance and co-ordination. It makes my legs fatigue and ache easily too. To correct the hydrocephalus, a shunt was put in when I was ten days old. The shunt is a tube that goes from my brain to my belly.

I have a learning disability called Auditory Processing Disorder (APD). It affects how my brain interprets sound. I have a hard time understanding oral instructions. My auditory memory isn’t very good.

I also have Inappropriate Sinus Tachycardia which basically just means my heart’s naturally too fast. I take medications for this, but my heart still frequently races. This makes me weak and tired and feel generally unwell. Stairs are hard enough with the DWV! The IST compounds the situation.

I also have mild asthma and severe environmental allergies. I have a long history of recurring sinus infections, hives and breathing issues.

I also have fused spinal discs in my neck and my spine is a bit curved around that same area. My neck is constantly stiff and sore. My feet are flat and they pretty much always hurt when I walk – for any length of time.

I have weak muscles behind my right eye, so I have to work hard to focus and hold my focus on things. It also makes me see things the same I would if I was drunk.

I also have a long history of getting sick with mysterious illnesses that leave me very weak and vomiting like crazy!

2. Do you consider yourself “disabled”? Do other people see you as “disabled”?

I’ve never considered myself “disabled.” I’m completely mobile and if I work hard, I can learn to do anything I want to. I finally learned to tie my shoes and swim unassisted in grade five and mastering these things gives me hope that I can master others! With special education help in math, I was able to understand it… And the patient directors of my school play helped me master their stage directions! My disability issues can make activity difficult, but nothing is impossible for me. For me, “disabled” means you CAN’T do something.

3. Do people treat you differently or unfairly because of your disability/condition? How so? Can you give an example(s)?

For the Dandy Walker Variant and hydrocephalus, my parents, teachers, doctors and therapists gave me many provisions to protect my shunt, try to prevent me from falling or getting injured and handle writing and walking fatigue. I feel like these provisions made my disability more apparent than the actual symptoms did.

4. If you could tell the world one thing about what it’s like to live with your disability/condition, what would it be?

I always feel sick for at least part of every day. I feel some sort of pain every day, whether from my neck, legs, feet or shunt. I tire or weaken easily. I opt not to do a lot of things I want to do because I know they’ll make me feel worse. I feel confused sometimes. I think about my health everyday.

I could never narrow it down to one thing because I have so many issues that affect me in different ways and in different situations.

5. What do you like about living with your disability/condition?

The APD has helped me fall deeper in love with writing because I am able to say so much more with writing than with talking.

I have become very attuned to my body. I feel that it gives me messages all of the time about what I need to do to be healthy and feel well.

I have become very patient with myself. I think about all of those times I had to struggle to learn something or complete a task that was difficult for me. Those times make me feel like I can do anything I want.

I am so aware that my health issues cannot kill me that I feel kind of invincible. I feel lucky to not have to deal with anything disabling or life threatening.

6. Is there anything else you’d like to share?

I’ve spent my whole life wondering when or if I should disclose my issues because I’m afraid of stigma. Sometimes I feel lucky that my disability is invisible because I get to avoid being defined by my issues. There are other times when I wish my issues were visible so that others will feel sympathy for me without me having to explain how I’m feeling or how my issues are affecting me. I have a hard time looking someone in the eye and saying “I’m having a hard time.”

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Women Living with Disabilities: Sadie Kay

Editor’s Note: Today’s post is the second in a series of interviews with women living with disabilities and/or chronic medical conditions.

Name: Sadie Kay
Blog: Radical Consent
Bio: I am a young professional in my mid-twenties.

1. What is your disability or chronic medical condition? How does it affect you both generally and on a daily basis?

I’m bipolar. For the most part, I’ve developed enough workarounds that I can live with my condition – though I am certainly not at ease with it. I’ve been diagnosed long enough that I find that the medication affects me more than the illness itself. I tend to be very tentative in the world because I am so used to part of the fabric of my perceptions getting pulled out from under me. Short term, because I feel that my illness makes me undeserving, I’ve spent a lot of time living in survival mode, scavenging what I need, emotionally and socially, to get by. Long term, one of the hardest things about being bipolar is keeping secret the reason behind all the differences in daily routines that taking medications brings about. I have to have a consistent story about what I don’t do and I have to stick to the story.

2. Do you consider yourself “disabled”? Do other people see you as “disabled”?

Yes and no. I consider myself disabled, but I very rarely use these words in describing myself to another person. I feel like disability is something more serious than what I have. I also struggle with my own tendency to see disability as a lack, or a failure to be “normal,” so I hesitate to identify that way publicly. Privately, I know that this illness makes my life, my day-to-day existence, hard in a way that I wouldn’t otherwise encounter.

But no, I don’t identify publicly that way. And others don’t see me as disabled, probably because they don’t know about my condition. I haven’t been able to give up hope that I’ll transform into a non mentally ill version of myself, and so I spend a lot of public energy keeping up appearances.

3. Do people treat you differently or unfairly because of your disability/condition? How so? Can you give an example(s)?

There’s the inevitable “have you tried x cure yet….?” Even so, lately it’s been less that people treat me unfairly than that I dread their doing so. A few years ago, when I first started school, my health insurance company denied me medication that I needed and had been prescribed. When I went to the student health center to find a doctor to advocate for me, the center called the cops. They kicked me and hospitalized me against my wishes – for asking for an advocate, for admitting that I wasn’t taking medication I couldn’t obtain. Because that was the first time I asked for help I have little to compare that experience to. Though most of the injuries have healed, I still fear reaching out for help because of those events. As a result, I feel like I’m expected to be super-human: never ask for help, never admit weakness or exhaustion, never break.

4. If you could tell the world one thing about what it’s like to live with your disability/condition, what would it be?

It’s not the disease that’s bad in itself, it’s how people treat the disease that makes mental illness unbearable. I suffer far more from well meaning or fearful or just plain bigoted people who haven’t bothered to learn about who and what I am before judging me than I suffer from being bipolar. I don’t mean just the big things like the insurance denials and the difficulty of finding a doctor who doesn’t judge me and trying to find someone who’s willing to date a crazy girl – I mean the little comments like “I’m so schizophrenic today!” and “wow, are you pmsing or are you just crazy?” They make a difference, you know. To me, if not to you.

5. What do you like about living with your disability/condition?

As much as I complain and am scared of it, I love the fragility and contingency of my life with a mental illness. When I had my first break I hallucinated. A lot. Over time, I learned that my mind can’t manufacture shadows for hallucinations, and I go through a phase during and after hallucinations where I check for reality by gauging the shadows of everything I see. I really like this phase. I spend so much time paying attention to shadows and sunlight that I find the world stunningly beautiful. I find my mind’s ability to repair itself again and again and still see sunlight and shadows instead of bugs under my skin something of a miracle.

6. Is there anything else you’d like to share?

I don’t know how many other people feel this way, but I see my illness as a kind of constraint. There’s this imaginary other-me, who I would have or could have been if I wasn’t bipolar, that I measure myself against. And when you struggle with a mental illness, measuring yourself against your hypothetical self is a good recipe for feeling that you-as-you-are don’t measure up. But then, I feel that I don’t fully measure up as disabled either. I just think it would be helpful if we could recognize that normal and disabled are continuums, not absolutely itty-bitty boxes we have to fit in the same way.

dumbo

"Dumbo... gives you an idea of what it feels like for me: skydiving without a parachute" -Sadie Kay

Women Living with Disabilities: Anna

Editor’s Note: This is the first in what I hope will be a long series of interviews with women living with disabilities and/or chronic medical conditions.

Name: Anna
Bio: I’m a full-time MA history student. For reasons that will, I think, become apparent throughout this interview, it’s not wise for me to go into more details about my personal life.

P10100531. What is your disability or chronic medical condition? How does it affect you both generally and on a daily basis?

I have a mental health condition.  I don’t feel comfortable telling people the exact diagnosis because I’ve seen it far too often used as an excuse to start bashing women who are diagnosed.  So I will just say I have a form of PTSD, and that women ‘like me’ have a “high rate” of successful suicides and tend towards dangerous self-harming behaviour.

My mental health condition is very cyclical in nature.  At the moment I’m in the middle of a very bad point in the cycle.  I don’t sleep much, I don’t eat much, I’m constantly convinced that people are out to get me, I have panic attacks, I can’t answer the phone, I’m afraid to check my work-related email, etc.

At other times, everything is fine.  (It’s hard for me to write about what ‘fine’ looks like, though.)

The difficult aspect is that part of my condition includes what’s called “emotional amnesia”.  When I’m down, I can’t remember how long I’ve been down – I feel I’ve been this way for months or even years.  When I’m up, I think I’m always happy.  It makes it difficult to treat things realistically in terms of what I’m capable of.

2. Do you consider yourself “disabled”?  Do other people see you as “disabled”?

I have a really difficult time adopting the term “disabled” and applying it to myself.  THOSE people, over there, they have REAL disabilities, that should be respected.  Me?  I’m just lazy/bad/selfish/whatever.  (Which is how women with my diagnoses are often referred to, as well.)  Saying “I am disabled; I have a mental health condition” is a big deal to me.

3. Do people treat you differently or unfairly because of your disability/condition? How so? Can you give an example(s)?

Since I typically chose not to self-identify, I don’t get treated differently.  But, I am aware of the stigmas around mental health, and read the reactions to people in my field identifying as having a disability.  It really depends on where you are in your career.  And I’m not in a place where saying “I’m crazy, I take crazy meds, and sometimes I’m sobbing uncontrollably for hours because someone was mean to me” is going to help me get a job.  Google is not my friend.

4. If you could tell the world one thing about what it’s like to live with your disability/condition, what would it be?

I am not my condition.  I am Anna; I have a condition.  I am not everyone you’ve ever interacted with who has been diagnosed.  I am not your textbook case.  Telling me how women who have been institutionalized due to my condition behave doesn’t tell me anything except that you’re making assumptions about me – we’re not interchangeable cookies.

5. What do you like about living with your disability/condition?

It’s hard to say – I can look back at my life and see the seeds of where I am now as far back as being 10 years old.  I don’t know what it’s like to not have this mental health condition.

I like that I care about people – I’m told that the degree of my caring is a symptom.

6. Is there anything else you’d like to share?

People tend to get angry or dismissive of my concerns about self-disclosing.  Because I won’t link to specific examples of people attacking women like me (for obvious reason!) they don’t believe that it could be that bad.  Believe me: it is.  Announcing to the world what’s “wrong” with me could scuttle my entire career.  It’s happened before.  We are not in a world where stigmas about mental health are non-existent.

People I have talked to about this have suggested that I be brave and self-identify, to combat the stigma.  Those people have jobs.  I’m struggling to make a career for myself in a very narrow field.  “Anna” is a pseudonym that I use on the internet (and is also a part of my given name) and in social situations.

Maybe, if I had a career behind me, I would be willing to ‘come out’ explicitly, but I’m not there yet.

Image courtesy of Danine’s garden