Checking My Privilege

Several weeks ago, fellow disability blogger and Facebook friend Dominick Evans posted his answers to a checklist on privilege. The idea is that you start out “standing” at the midpoint on a scale of social and economic privilege, then take steps forward, backward, or stand still, according to your answer to each question. The questionnaire isn’t designed specifically for disabled people, but I think it produces a fairly accurate, honest picture of relative privilege.

Here are my answers. As you will see, my disabilities subtract fairly little from an overall surplus of privilege. For what it’s worth, my score feels more or less correct to me.

1. If your parents worked nights and weekends to support your family, take one step back.

     No. Stay.

2. If you are able to move through the world without fear of sexual assault, take one step forward.

     I’m not sure my confidence is justified, but I don’t think about it, so Yes. Step Forward.

3. If you can show affection for your romantic partner in public without fear of ridicule or violence, take one step forward.

     Yes. Step Forward.

4. If you have ever been diagnosed as having a physical or mental illness/disability, take one step back.

     Yes. Step Backwards.

5. If the primary language spoken in your household growing up was not English, take one step back.

     No. Stay.

6. If you came from a supportive family environment take one step forward.

Yes. Step Forward.

7. If you have ever tried to change your speech or mannerisms to gain credibility, take one step back.

     Maybe a little bit, due to disability, but on balance I would say No, I have never really felt a need to adapt in any cosmetic ways. Stay.

8. If you can go anywhere in the country, and easily find the kinds of hair products you need and/or cosmetics that match your skin color, take one step forward.

     Yes. Step Forward.

9. If you were embarrassed about your clothes or house while growing up, take one step back.

     No. Stay.

10. If you can make mistakes and not have people attribute your behavior to flaws in your racial/gender group, take one step forward.

     No. I have many times felt that mistakes and shortcomings were attributed to my disabilities. Stay.

11. If you can legally marry the person you love, regardless of where you live, take one step forward.

     I am going to say No, because of how marriage adversely affects disability benefits. Stay.

12. If you were born in the United States, take one step forward.

     Yes. Step Forward.

13. If you or your parents have ever gone through a divorce, take one step back.

     Yes. Although it happened when I was a young adult, my parents divorced. Step Back.

14. If you felt like you had adequate access to healthy food growing up, take one step forward.

     Yes. Step Forward.

 

15. If you are reasonably sure you would be hired for a job based on your ability and qualifications, take one step forward.

     No, I’m not sure of this, because of my disabilities. Stay.

16. If you would never think twice about calling the police when trouble occurs, take one step forward.

     Yes. Although police behavior concerns me, I don’t personally feel like I am at greater risk. Step Forward.

17. If you can see a doctor whenever you feel the need, take one step forward.

     Yes. Step Forward.

18. If you feel comfortable being emotionally expressive/open, take one  step forward.

     No, not entirely. Stay.

19. If you have ever been the only person of your race/gender/socio-economic status/sexual orientation in a classroom or workplace setting, please take one step back.

     Yes, I have been the only disabled person. Step Back.

20. If you took out loans for your education backward.

     No. Stay.

21. If you get time off for your religious holidays, take one step forward.

     Yes. Step Forward.

22. If you had a job during your high school and college years, take one step back.

     No, not really, and certainly not by necessity. Stay.

23. If you feel comfortable walking home alone at night, take one step forward.

     Yes. Step Forward.

24. If you have ever traveled outside the United States, take one step forward.

     Yes. Step Forward.

25. If you have ever felt like there was NOT adequate or accurate representation of your racial group, sexual orientation group, gender group, and/or disability group in the media, take one step back.

     Yes. Step Back.

26. If you feel confident that your parents would be able to financially help/support you if you were going through a financial hardship, take one step forward.

     Yes. It happened more than once. Step Forward.

27. If you have ever been bullied or made fun of based on something that you can’t change, take one step back.

     Not often, but Yes. Step Back.

28. If there were more than 50 books in your house growing up, take one step forward.

     Yes. Step Forward.

29. If you studied the culture or the history of your ancestors in elementary school take one step forward.

     Yes. Step Forward.

30. If your parents or guardians attended college, take one step forward.

     Yes. Step Forward.

31. If you ever went on a family vacation, take one step forward.

     Yes. Step Forward.

32. If you can buy new clothes or go out to dinner when you want to, take one step forward.

     Most of my life, Yes. Now, No. Stay.

33. If you were ever offered a job because of your association with a friend or family member, take one step forward.

     Yes. Step Forward.

34. If one of your parents was ever laid off or unemployed not by choice, take one step back.

     No. Stay.

35. If you were ever uncomfortable about a joke or a statement you overheard related to your race, ethnicity, gender, appearance, or sexual orientation but felt unsafe to confront the situation, take one step back.

     Yes, regarding disability, and I felt uncomfortable about confronting the person. Step Back.

RESULT: I am 11 steps ahead of where I started.

This questionnaire is pretty good, but it could be better at measuring disability factors. For example:

1. For disabled people, not having had a job during high school or college is usually a competitive disadvantage, rather than an indicator of privilege, as question 22 seems to assume. I’m not sure how to fix that for scoring, but it should be addressed.

2. Disability should be added as a possible factor to many of these questions where they aren’t already.

3. Add a question about being able to easily purchase clothes that fit properly and preset you in a stylish, professional manner, which is hard or impossible to do for many disabled people.

4. Add a question about whether you need direct, one-on-one help with essential everyday tasks in order to function. This is something that some, but not all disabled people need, and is a disadvantage in terms of privilege, even when daily help is available, because it is a major life factor other people simply don’t have to deal with.

None of these adjustments would change my overall results very much, but they would make this a more useful questionnaire overall.

This thing isn't meant to make you feel bad, no matter what the outcome. It's more of a self-awareness and thinking tool. Give it a try.

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A Must Read on Two Kinds Of Disabled People

On Being "Ugly Disabled"

Cara Liebowitz, That Crazy Crippled Chick - June 17, 2015

This article is way too great to leave for my weekend Weekly Reading List post.

First of all, I am “Ugly Disabled” as Cara defines it here. Which is to say that because of my disabilities, I mostly don't fit mainstream standards of physical attractiveness. Which is not to say that I hate how I look, or that there’s nothing physically attractive about me. It’s just that, like Cara and so many other disabled people, I don’t look “normal except for …” So, I relate to this very personally. I get where she’s coming from.

Second, I wholeheartedly second the part about how people who are “Pretty Disabled” seem to have a bit of a social edge on us, even in a community that’s all about inclusion and equality. When I first started working in Independent Living, and for the first time found myself in rooms filled with fellow disabled people of all kinds, I admired the ones who looked really slick and put-together in their cool, quiet, lightweight manual wheelchairs. And, I am ashamed to say, I felt less than fully comfortable around the disabled people "who rock and flap and whose speech is sometimes not fluent.” I got over both the hero-worship and the internalized ableism ... mostly ... but the distinctions are still there in my mind.

Finally, I would like to point out how beautifully and precisely Cara describes her disability, in a neutral, non-melodramatic tone, and with concrete terms anyone can understand. I don’t know whether it was therapeutic or revelatory for her, but I have sometimes found it helpful to write a description like this of my own disabilities. I wonder if that would be a good exercise for teenagers growing up with disabilities, to help them explore what disability means to them, as opposed to whatever they have been taught to think about it?

Please do follow the link and read the post. It is important and a pleasure to read.

Via the Disability Visibility Project Facebook Page.

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Throwback Thursday

A year ago in Disability thinking ... A Ventilator In A Fraternity House.

I need to do more biographical posts.

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Veterans Day

My maternal grandfather, Carroll Dana Fearon, was an ambulance driver in Italy during the First World War, serving in the United States Army Ambulance Service. He was in basically the same outfit as Ernest Hemingway, in a conflict that started 100 years and 3 months ago.

Grandpa was deaf. I think, though I’m not positive, that he lost much of hearing during the war. For all of the time I knew him, he used a hearing aid that worked reasonably well, and I don’t think he ever learned Sign Language. However, his hearing loss was noticeable to others, and I’m sure that while he was a highly functional and successful businessman, being deaf was something he had to consciously grapple with every day.

Grandpa Fearon died 1987, when I was 20 years old. I wish we had overlapped a few more years, so that I could have talked with him more about his war experiences and how he felt about his own disability. I bet he could have told some stories about the disabilities he saw imposed in such massive quantities by a modern, mechanized war fought with strategies that were already out of date in the Civil War.

Losing A Teacher

"Remembering Lucy Gwin”

Steven E. Brown, Disability Visibility Project - November 10, 2014

“Mouth” magazine was one of my first introductions to disability culture and what we might roughly term “radical” disability philosophy, back when I was a new staff member at a Center for Independent Living. Along with the somewhat similar “Disability Rag” / “Ragged Edge", Lucy Gwin’s “Mouth” is where I discovered that disability rights and awareness are about more than a few ramps and superficial acceptance. In the newsprint pages of these two pre-Web journals, I learned:

- Why, exactly, nursing homes and other institutions are terrible, not just distasteful. They not only rob residents of their full humanity, they are an outdated, inadequate, and inefficient way to meet the needs of elderly and disabled people who need some help with everyday tasks. I first read well-researched details about all this in the “Mouth”.

- How the experiences of physically disabled people are similar to those of cognitively or mentally impaired people … surprisingly similar to me, at the time when I read about it.

- The various “Catch-22” traps all sorts of disabled people face daily … For example: Either you’re too disabled to be trusted to run your own life, or you aren’t disabled enough to get services you need to function with the disabilities you do have.

- That truly horrific injustices happen all the time to disabled people, not just small indignities and embarrassments.

- That the sheer absurdity of ableism is it’s key weakness, and laughter is one of our most effective weapons.

The “Mouth” was one of my textbooks, which I guess means that Lucy Gwin was my teacher. I suspect there are hundreds, maybe thousands of other disabled people, and allies, who can say the same. I’m so sad that she’s gone.

Bullying

Obama Administration Clarifies Anti-Bullying Protections For Students With Disabilities

Joy Resmovits, Huffington Post - October 22, 2014

I have often wondered why I was never bullied in school.

Conventional wisdom would suggest that I should have been picked on mercilessly. I was very short and weak. I looked weird. I wore glasses. I was brainy and nerdy. I went to high school in a semi-rural, semi-suburban community in the early 1980s … decades before diversity and tolerance became prominent concerns in public schools.

Yet, I can’t recall a single incident of bullying, based on my disabilities or anything else. Not everyone liked me, but that’s normal. To my knowledge, I was never picked on because of my differences, and my relations with classmates never caused more than occasional anxiety or stress. It’s possible that people talked about me in bullying ways behind my back. But if I never became aware of it, then who cares?

If I escaped bullying because of things that I did right, I have no idea what they were.

If it was because of things my school did right, I don’t know what they were or whether their practices would be applicable today.

Was it because my disabilities were only physical, not mental or cognitive?

Were kids in the ‘80s nicer than they are today?

Was I just lucky to attend an especially harmonious, well-adjusted high school?

I know that to people who have directly or indirectly experienced bullying, this is an enviable mystery. But it feels like a mystery well worth trying to solve, since stopping or curtailing bullying seems to be such a puzzle. Most articles on the subject focus on simply recognizing bullying and deciding to fight it. Few offer any hints about how to do it … for schools, parents, or even disabled students themselves.

P.S.: This is the 1,000th post at Disability Thinking.

Is Looking Normal The Only Thing That Matters?

Paralyzed bride shocks guests

CNN / KETV - October 6, 2014

(Click the link to watch the video ...)

Oh, dear. I know this is supposed to be lovely, but I found it upsetting.

First of all, I find it sad that the bride is so fixated on “walking” down the aisle rather than wheeling. She is going to enormous effort and expense for one moment. There is no indication here that this is part of a more long-term, practical improvement in her mobility. It’s just for the wedding. It’s as if she thinks that walking is the only “right” way to do it, and so she’s determined.

On the other hand, brides and grooms often go a bit overboard and obsess about making a splash at their weddings. Maybe that’s all she’s doing here, though that is not how CNN seems to interpret the story.

So, why did this video actually make me angry?

For some reason, it tapped into a well of anxiety deep inside me, and this immediately produced a very vivid picture for me. I have somehow fixed one major aspect of my disabilities … my spine is now totally normal, no longer deeply curved. Everyone I know is more excited and overjoyed about this than they have ever been for any of my past accomplishments. It’s a bigger deal than graduating from high school or college. I get more congratulations than when I got my first job. I am more admired than I ever was after any of my countless surgeries that had less visible results. The message is clear. All of my past accomplishments pale in comparison to this one, because NOW I AM NORMAL.

This scenario could never happen. There is nothing that can be done at this point to straighten my spine … or make me taller or more muscular for that matter. It’s all in my imagination. But the reaction I imagined seemed very real and very plausible, and it felt horrible. Imagining fixing one of my disabilities felt horrible. And this wasn’t an idea I thought up intellectually after hours of deep thought. It’s an emotion that hit me without warning less than ten seconds after watching this video.

Let me be clear. I have very supportive friends and family who have given me the extremely valuable gift of self-confidence and acceptance. I am not suggesting that they would react this way. I am saying that they might. That’s probably why this vision was so chilling. Seeing this woman with so much going for her yet seeming to value a moment of normalcy above everything else, made me wonder, for a moment, if everything good I’ve done in my life is really just a consolation prize. Maybe the most meaningful “miracle” I could pull off would be to be normal. Maybe my disabilities are a permanent asterisk in other peoples’ eyes.

I think that's one reason why so many disabled people don’t embrace the goal of a cure, why we don’t necessarily always shed a tear when a paraplegic walks or a deaf kid hears for the first time. I have no problem with this woman deciding to go all out for an essentially cosmetic moment at her wedding. She can do what she likes, and more power to her. What bothers me is how CNN and others turn her into some kind of a hero. To me, it degrades all of the other things in her life she has to be proud of. A job in her chosen field? Yeah. Nice husband? That’s nice. BUT LOOK … SHE’S WALKING!

On the bright side, there’s a moment at the start of the video when her father says, in effect, that it doesn’t matter to him how his daughter gets down the aisle, on foot or in a wheelchair. He supports her wish to walk, but it seemed to me like he was trying to tell her something important, something she may not really believe yet … that disabled or not, he accepts his daughter and loves her as she is. That message got drowned out though by the rest of the clip, which made it even more upsetting.

Anyway, I feel better, now that I’ve got this out of my system.

Writing Process Blog Hop

This is my response to a Blog Hop that came to me via Emily Ladau of Words I Wheel By. 

What am I working on?

Aside from actual blogging, I am working on my new podcast, Disability.TV, which is about how disability is portrayed on television. It’s going pretty well, I think, though I am much better and more comfortable writing than speaking. So far I have reviewed the original Ironside (the one with Raymond Burr), and this week I’ll be discussing the new Ironside, starring Blair Underwood). I have some guest hosts scheduled as well, which I think will make the podcast much more lively.

Meanwhile, I am starting a part-time job as a writing tutor at a local community college. I really hope I end up being good at it, because on paper it’s the perfect job for me … not too many hours, involves writing, and it helps people I greatly admire, people working really hard, often against formidable obstacles, to further their educations.

How does my work differ from others of its genre?

When I started the Disability Thinking blog over a year ago, I promised myself that I would write something on it more or less every day, barring illness, life interruptions, and the occasional day off to enjoy sunshine. One of my blogging role models is Duncan Black, who has been running his political commentary blog Esctaton since 2002. He posts at least 3 or 4 things every day. Sometimes it’s just a single thought, expressed in a few sentences. In fact, he almost never writes essay-length posts. A lot of his posts are responses to stuff he’s read. I do that, too. I want to make Disability Thinking a place where you can visit every day and be pretty sure to find something new to read about disability. It won’t always be brilliant or even very original, but there should always be something to think about or read further about, and I cover a lot of topical ground, from politics to popular culture.

Why do I write what I do?

Why disability? Because a. I have had disabilities all of my life, b. I spent over 20 years working in the disability rights / independent living field, and c. there are a LOT of things I haven’t figured out yet about disability. Also, it seems like the field of disability blogging is comparatively small. It isn’t nearly as small as I thought it was when I started out, but it still feels like all of the “serious” (i.e. consistent) disability bloggers in the world could meet in a medium-sized meeting room.

How does my writing process work?

It all usually starts by jotting down ideas for longer essay posts and shorter observations at various times during the day, using the Apple “Notes” application for the Mac and iPhone. I usually have 4 or 5 topics going that eventually might become posts. Every morning, I also check out news items and other bloggers’ posts related to disability, sometimes queueing them up to read later. These might inspire the posts where I link to articles and other blog posts, and add some comments or ideas of my own. I have a list of bloggers I read all the time, I check Twitter, Tumblr, and somewhat less often Facebook. I also have my Google News page set to highlight stories related to disability. This is a pretty effective tool, expect for the articles mentioning professional baseball players who are on “the disabled list”.

Once an idea reaches a certain state of completeness in my mind or my notes, I usually write it in about an hour or maybe two. Then I spend about half an hour or so editing, add graphics when possible, and post. I try to post at least one piece of writing by early afternoon, and one other item … an interesting picture, video, or brief thought … by dinnertime. I also cross-post most things to my Tumblr site, and I post links to everything I do to Twitter.

This process works for me, in that I have mostly managed my goal of daily activity on the blog. One thing I’d like to improve is my editing process … ideally giving most longer pieces a full day to edit before posting. That takes willpower, though, and so far I’ve had a hard time resisting that “Post” button.

This is a Blog Hop, and I am tagging the following disability bloggers: Ellen Seidman of Love That Max, Christina Stephens the AmputeeOT, and Sarah Levis of Girl With The Cane. I look forward to seeing their responses!

Disability Visibility Project

 

I have been seeing Tweets, articles, and blog post about the Disability Visibility Project for several weeks, and thought about posting something about it. Then, out of the blue, the project’s coordinator, Alice Wong, contacted me about being a “media partner”, which I am very glad to do.

What is the Disability Visibility Project? The project’s website explains it best:

"The project’s purpose is to collect stories from Americans with disabilities and have them archived at the American Folklife Center at the Library of Congress. Starting July 2014 to July 2015, anyone going to one of StoryCorps’ three locations can contribute their oral history in celebration of the upcoming 25th anniversary of the ADA. By tagging their interview as part of the Disability Visibility Project, they will become part of a collection of stories from the disability community. Having these stories recorded and available to the public will preserve disability history, making them accessible to all."

"The Disability Visibility project is a community partnership with StoryCorps. StoryCorps is an independent nonprofit whose mission is to provide people of all backgrounds and beliefs with the opportunity to record, share, and preserve the stories of our lives. StoryCorps partners with the American Folklife Center at the Library of Congress, and with National Public Radio with whom they have a weekly broadcast every Friday on Morning Edition."

On a personal note, I have been listening to StoryCorps programs on NPR for many years. I think it’s a great idea to make a concerted effort like this to get peoples’ disability stories included in this massive and growing audio archive of everyday peoples’ stories. If you are reading this blog, chances are you already like reading the thoughts and stories from disabled people, and maybe you share some of your own stories, too. This is another way to do that, in a somewhat higher profile way.

Even if you can’t get to a StoryCorps location, you can help by boosting the information to other bloggers, blog readers, Facebook friends, Tweeters, and other people you regularly reach through social media. Plus, this is a year-long project, so who knows? StoryCorps could come to you one of these days!

A Little Moxie Summer Blog Hop - "The Early Years: A Letter to Myself"

Dear 13 Year Old Me:

You’re doing fine, and if you don’t listen to any of the little tips I’m about to give you, you’ll still be fine. Just keep them in mind, especially over the next ten or 15 years or so:

- Don’t blow off the idea of exploring relationships and sexuality, just because you’re convinced nobody would “want you”, and because right now you don’t actually really mind. You will think differently later on, and lack of earlier experiences can be a far greater hinderance than your physical appearance ... which, incidentally, isn't as weird as you think it is. Your default setting is to be a loner, and that’s fine, but it means you need to practice sharing your life with others, and letting them share their lives with you.

- Get away from Mom and Dad as much as possible. They are great, and I don’t mean you should literally leave them or push them away. But they have their own issues, and you could waste a lot of time tangled up in them when you should be exploring your own community apart from them.

- Learn how to work hard and work smart as soon as possible. Get a job, or at least a complex, demanding volunteer position. Look for ways to challenge yourself academically beyond what’s immediately available at school. You may have disabilities, but a lot of things come fairly easy to you, and you need to learn what it's like to do the harder things well.

- Try to meet other disabled kids and adults. Don’t try to act like you’re not one of them, because no matter what anyone says and regardless of what you’ve convinced yourself, you are. Plus, contrary to what you think now, lots of other disabled people are fun, amazing, and great to be around.

- Your disability aside, you have a lot of advantages. Don’t feel bad about using them, but don’t coast on them.

Like I said, you are doing fine. But “fine” doesn’t have to be the highest achievement you aim for. Just because you are disabled, doesn’t mean you can’t do better. Be happy, but don’t feel you have to settle for “fine” forever.

A Little Moxie Summer Blog Hop - "My Connection with Disability: An Introduction"

This is my first contribution to the "A Little Moxie" Summer Blog Hop.

My connection with disability is that I have disabilities. Actually, I have one underlying genetic condition called Arthrogryposis, which produces a variety of impairments.

That doesn't mean that I have always connected with my disabilities in the same way. Looking back, it seems like I have gone through four phases in my understanding of disability:

Aware and Ignore

I can’t remember a time when I didn’t know that I was physically different from most other kids, and it feels like I always associated this with words like “handicapped” and later “disabled”. When I had to have surgery, intensive physical therapy, new braces or orthopedic shoes, I would focus on my disabilities for a brief window of time. Mostly, I ignored them while adapting to them. That is, I never tried to act like I could do everything non-disabled kids did … I didn’t ignore my disabilities that way. But I didn’t think about my disabilities or excessively worry about them during times when nothing in particular was happening with them. Until my Senior year in college, for the most part, the topic of disability in general bored me.

Awakening

I was a Senior in college in 1989, the year that students at Gallaudet University made national headlines with an extremely effective protest that resulted in the appointment of Gallaudet’s first Deaf President. Gallaudet is the nation’s premier university for the Deaf, nearly all of its students are Deaf, and their protest was the first time I became aware of people with disabilities focused on disability but in a militant and empowering way, not pleading or pitying. This was the era when Jerry Lewis was still broadcasting a popular and admired telethon fueled on tears, sad photos of bereft children, and the catchy by in retrospect creepy concept that kids and adults with Muscular Dystrophy were “Jerry’s Kids”. This was disability activism in my eyes, until I saw the Gallaudet uprising. It’s important to note that it was not at all the first mass protest by disabled people in history, just the first one I knew anything about. My attitude towards my own disability started to change then. I began to realize that there might be a connection between a part of myself I sort of despised … my disabilities, and something I had come to love, political thinking and activism. I still didn’t do anything about it right away, but for the first time I could envision another way to think about disability that was both personal and political.

Working

A few years later, after writing a Master’s thesis on depictions of disability on television, I learned that a Center for Independent Living had opened in my home town. I didn’t know what a CIL was, but I soon found out, and got a job there after doing a summer internship. Over the next 23 years I went from a staff position to being Executive Director. No matter what position I held, however, the important thing is that I got to know literally thousands of people with all kinds of physical and mental disabilities, from every conceivable background, with a variety of strengths and human frailties, and facing social, physical, and sometimes most significantly … financial barriers to independence and fulfillment. This experience broadened my horizons, and gave shape to my understanding of things like ableism and discrimination, body shame and acceptance, trauma and empowerment, and how disability crosses with race, gender, education, and economic status. I also developed strong convictions about long term care, education of disabled kids, and the importance of policy in affecting the lives of people with disabilities. And, I got very tired, and very burned out. Worst of all, from my point of view, I started to feel cynical about the people we were trying to “help”. It seemed like “we” in the Independent Living Movement were more interested in independence and empowerment than the people with disabilities we met in our communities. For that and other reasons, I stepped down from my position, and started “disability blogging”. Physically, I needed to rest. Mentally, I needed to refocus and recharge … or else cut my connections for good and do something else entirely.

Listening and Learning

Blogging turns out to have been the perfect choice. I went in thinking that there were few good disability-related websites and blogs, and instead found not one, but several vibrant disability blogging communities that restored my faith in the disability community, and my humility about having all the answers. I found parents of kids with disabilities, whose blogs provoked me, challenged me, and gave me new insight into my childhood and family. I found younger people with disabilities … teens and young adults … who seemed to perceive no great contradiction between complaining when disabilities got hard, calling out ableism in everyday life and culture, and being awesome in their disabled bodies and minds. There are lots of 25 year olds who are more comfortable with their disabilities than disabled people twice and three times their age. I also found that my ideas of disability weren’t necessarily state-of-the-art anymore. Some aspects of newer thinking about disability I have a hard time with, but for the most part, new formulations and ideas have energized me, and given me a renewed respect for disabled people of all sorts who do what they must to survive and thrive.

Finally, this journey has brought me to the point where I feel both more comfortable with my own disabilities, and more unsettled and curious … in a good way.

Happy Father's Day!

I found it fairly easy to write a Mother’s Day post about my mother, but as soon as I started this Father’s Day post, I realized that it would be much more difficult. Not because I have bad feelings or terrible “trigger warning” stories about Dad, but because his approach to my disabilities was complicated and conflicted.

To try getting a handle on things, I will simply note a few things about my father, Peter Pulrang, and hope they amount to some kind of coherent idea:

- I was born when my parents were around 40 years old, and their only other child, my brother Ian, was 14. So, I was a surprise in more ways than one. Sort out the implications of that if you dare to try ...

- Dad was a pediatrician, and though I am prejudiced of course, scores of people who live in my home town who I don’t even know have told me he was a terrific doctor for his patients and their parents. I am positive that Dad’s connections in the medical community amount to a pretty massive dose of privilege that I am happy to have had, especially when I was too young to know it.

- Even though he was a doctor, and my mother didn’t have a very high opinion of the medical profession, Dad was at first not the most committed of my two parents to pursuing aggressive medical care and therapy for me. Dad’s medical philosophy was minimalist, and I think that until he knew more clearly that there was perhaps less wrong with me than met the eye, his higher priority was protecting me from pain and suffering. I can only love him for that, but those of us who have had disabilities all our lives know how mixed the results of parental protectiveness can be.

- On the other hand, in many ways, Dad had the harder job of it, because he was definitely the point person and organizer of all of my medical care, and also the one to oversee my often painful physical therapy. He never entirely rebelled against this role, but I can still pretty clearly remember that he hated the exercises, especially, because they required him to cause me physical pain. Pediatricians cause little kids physical pain all the time of course. That’s why in general, doctors aren’t supposed to treat relatives. But I guess being a father doing home PT with your kid doesn’t count. Maybe it should.

- Dad was still helping me get dressed every day when I was a freshman in high school. I wish I could say I was the one to insist on my own independence, but it was Mom who stepped in and said enough already. It took almost no time, effort, or any sort of Occupational Therapy for me to learn how to dress quickly, so I probably could have been doing it much earlier. I think Dad just kept helping me out of habit, out of impatience (he hated seeing a person struggle to do something “the hard way”), and because helping me was how he expressed his love. It sounds too transparent and awful to be common, but I really wonder how many parents unconsciously use a child’s disability to preserve a sort of idyllic parent-child relationship well past its expiration date.

- My father ended his career in Public Health administration. In his professional capacity, in the early 1980s, he met some disability rights activists. I think that’s where Dad started to pick up some of the more positive “Social Model” ideas of Disability Rights and Independent Living. He tried, valiantly, to introduce these ideas to me when I was a teenager, but I was, you know, a teenager, he was my father, and I was convinced that he was talking nonsense. To me, disability was nothing but an embarrassing pain in the ass, and the idea that it could be a political identity or something to be proud of was beyond my comprehension. It must have taken all the self-control he had not to say “I told you so” when years later I ended up working in the Independent Living Movement, and explaining to him the finer points of progressive disability philosophy. Sons can be super annoying, no?

- I am always in danger of forgetting this … but Dad had dyslexia, and I think maybe a mild case of ADHD. The latter is just speculation on my part, but the dyslexia was, I guess, the real deal. Of course, it had to have been most difficult in his childhood and teen years, at at time before anyone had any notion at all of learning disabilities. I don’t think his childhood was unhappy, exactly, but Dad was pretty specific in describing an education drilled into him by well-meaning people who probably only half understood what they were dealing with. This had to have affected his concept of disability, but exactly how I’m not sure. Occasionally, when I hear people say how remarkable I am to have done so well with my disabilities, I think about my Dad, who I don't think ever got proper credit for graduating from Princeton, and then McGill Medical School when reading and writing were such slow, laborious processes for him.

- Dad also experienced significant hearing loss later in life, probably due to exposure to loud engine noise as the Co-Pilot of a B-24 in the Second World War. He wasn’t fully deaf in either ear, but it affected his sense of connection to other people, making him feel more isolated and “left out” of things. Again, I think this must also have influenced how he viewed disability.

As happened with my mother, my relationship with my father was at its best when I was fully grown up and he was retired. We saw each other less, but developed a stronger, connection … not always agreeing, but always engaging.

Looking back, I can see that Dad and I had a relationship that was at the same time very unusual, and utterly typical. At any rate, I sure do miss him.

Dad getting into his trainer airplane, c.1943.

Dad and Mom, I think shortly before they married.

My brother, Ian in front, Grandpa Pulrang on the left, Dad on the right.

Dad and me ... 1986.

Dr. Peter C. Pulrang, 1925-2008.

I Love My Ventilator ... And Other Thoughts On Disability Gear

Last Friday, I said that I love my ventilator, the machine I use every night that helps me breathe. I have almost an affection for it. It comforts me. I always feel a little insecure if I’m not within an hour’s drive of it … even though I don’t use it during the day. I added that I felt the same about my electric scooter when I used one to get around campus when I was in college.

I wondered what other disabled people feel about their various items of “disability gear”. Here are the responses I got on this blog and over on my Tumbr blog:

"I've had a power wheelchair for years after having used a scooter most of my life. I definitely like the wheelchair better by comparison, but I would shy away from attributing real emotion to assistive technology. It's great thing it's available, but I view it as a tool. Hope others chime in.” — Rob J. Quinn, I’m Not Here To Inspire You

"I am coming to terms with my new limits and getting used to the cane, and very very slowly coming to terms with the idea of using a chair and reclaiming my life. The process has been incredibly hard. Fucking pride man… and like this long standing idea that if you can walk, you shouldn’t use a chair.” — Tattered Obsidian

"I make my wheelchair a fashion statement. It’s my best accessory. It’s my lifeline to independence - without it, I’ll be so dependent. Plus… I use it to get the hot guys to notice me. ~ V :)” — Vilissa Thompson, Ramp You Voice!

"We don't have a lot of specialized equipment for our 18yo daughter with moderate cerebral palsy any more. There were days when our whole house was overflowing with special cups, scissors, pencils, leg braces, hand splints, bulky seating equipment, huge car seats, bath chairs, nesting benches, switch toys, and over-sized exercise balls. There are still things that aren't typical for an 18yo - sports cups instead of glasses, a bib loaded with paper towels to soak up spills, a retractable badge hanging from her belt with a washcloth to wipe her mouth, a basic bath chair available at any drugstore. But, I have to say, it's nice to have less special stuff and less clutter. Don't get me wrong, I actually do love what we have, but only because they serve a necessary purpose.” — Kerith Stull, Brielle and Me

"My son when he was younger use to use a walker but when he started Kindergarten he began to use arm-band crutches. He has Arthrogryposis but it only effects his lower part of his body. He has very little muscle in his lower limbs. We keep an older set at the top of our stairs so he doesn't have to crawl around. We've had to purchase 4 so far. We can adjust them as he grows but it only goes to a certain height. The problem we have come across is the rubber bottom part of the crutches wear out quickly and aren't easy to find. We try to buy extra so we have them on hand. I tried to find a place locally that we could donate some of his leg and body braces from when he was younger but I guess it's a liability to use used equipment. We do have a wheelchair as well for when h e's had surgeries or when he breaks a bone, which he does often because he has brittle bones. But we pay a monthly rental fee for it. Our goal has always been to make easy and as normal for him around the house. He's now 9 years old and is pretty strong!” — Mari Blair

People appreciate the practical value of adaptive equipment. Wheelchairs, crutches, and all kinds of other devices make life easier for disabled people. If you have an impairment, like not being able to walk, then equipment like a wheelchair is liberating.

On the other hand, we live in a society where assistive devices still tend to symbolize disability. You still hear people talk about someone being “wheelchair bound”, and “throwing away the crutches”, as if the equipment is the disability. While it is natural for people adjusting to new disabilities to feel negatively at first about adaptive equipment, I think that people who continue feeling awful and stigmatized by their adaptive devices tend also to have negative feelings about their own disabilities, and maybe a bit of self-loathing, too.

One factor I think gets overlooked, however, is the quality and fit of adaptive equipment. A heavy, one-size-fits all rental wheelchair is not as liberating as a custom fit lightweight. A hearing aid that doesn’t work properly can be literally a pain. Having a bunch of gadgets you didn’t choose, that someone else told you would be useful but aren’t, can be demoralizing.

In her later years, my grandmother was, as she would say, “lame”. She and my grandfather lived in a nice condo in Florida, but she rarely went out, and my parents were pretty sure it was because she didn’t like being seen in a wheelchair. Mom and Dad interpreted that as Grandma being vain and old-fashioned, and it saddened them to see her cooped up for what they felt was no good reason. "Fucking pride man."

They may have been right. Grandma was born before the 20th century started, and she was, in many ways, “proud”. Thinking back on it, though, I wonder whether part of the problem was that in the late ‘70s she simply didn’t have access to adaptive equipment that wasn’t cumbersome and unnecessarily ugly. I’d love to travel back in time and give her a sharp-looking, powered Hoveround or Jazzy. Grandma had a walker, too, that was functional but drab. I wonder if she would have enjoyed one in cool colors … maybe some pinks. She liked pink.

I think it’s important for both disabled and non-disabled people to remember from time to time that disability gear is meant to be liberating, not a millstone. A walker is not a disability; it makes a certain kind of disability easier to live with. And it’s not crazy or some kind of conscious stance that many of us feel close to our devices. We don’t like strangers randomly touching and handling our wheelchairs, and when our canes and walkers are taken from us we feel incomplete and vulnerable. My ventilator was portrayed to me as an unpleasant last resort before I got it, but I feel like I am really at home when it’s there … even if I’m in a motel room in a strange city.

I’ve never decorated any of my adaptive items, but you know, my tracheostomy tube uses disposable fabric ties. Maybe one of these days I should see how it feels to wear one in a chosen color other than hospital white.

About Our Bodies

Why I No Longer Apologize For My Crutches

Natalie E. Illum, Guest Writer, The Body Is Not An Apology - April 28, 2014

Via The Disability Fashion Project.

This is another great article on the very tricky, hard to explain, but absolutely crucial issue of disabled people learning to recognize and then shed shame about our bodies.

Don’t let the art world and poetry slam setting of the essay distract you. You don’t have to be a poet or a performance artist to grapple with the same issues Natalie Illum did, or to make the progress she has. One part of her story that I think might be essential, though, is having a friend or even just a casual acquaintance ask the right question or say the right thing at the right moment that helps penetrate the walls we build up around us and get to the kernel of the issue. Do we love, do we accept, do we have any positive feelings at all about our bodies, or not?

For most of my life, I assumed that it was enough to appreciate my own mind, and sort of forget about my body. Now I’m not so sure that’s a choice you have to make, just because you have physical disabilities. It may not even be a sustainable choice. Fortunately, it seems like one of the few things you can change about yourself, without needing other people to change as well. You can just start appreciating your body as it is, and having some fun with it’s unusual shapes and angles. That positivity can often rub off on others, and they in turn will be more positive about your appearance. But even if they don’t, it doesn’t really matter because you made the key change in your own head.

Happy Mother's Day!

One of the things I will always appreciate about my mother, Claire, is that she always treated me like a person.

She used to say that she enjoyed her two kids much more when we got older because you can't have real conversations with a baby. As we got older, we got more interesting … not easier mind you … more engaging. In other words, at some point we became people to her. I never felt like Mom saw me as anything more or less than a person, never a symbol, a message, a burden, or a reward. In her eyes, I didn’t represent or mean anything but myself.

At the same time, Mom was definitely the sort of person who thought that individuals were important mainly in terms of what they did. She wasn't a right winger or a capitalist, so she didn't care that much about whether people were "productive" or "successful", but rather that everyone should fulfill their potential and add something to the world.

Mom didn’t have much of a direct influence on my disability consciousness, because I don’t think she ever adopted any distinct personal theory of disability. I think for her, disability was just a thing that happened, not something you had to think about much beyond practicalities. That was pretty much how I viewed my disabilities until well into adulthood. And even though I now wrestle with the social and political aspects of disability, personally, I still tend to think of my own disabilities in purely practical terms.

That's fine. Mom helped me become a person, and appreciated me as a person, which gave me a strong base to build on. I think that's the best thing parents of a disabled child can do. I don’t spend a lot of time these days actively missing Mom, but I often wish I could discuss ideas about disability with her now. I wonder what she would think? I do know it would be a great conversation.

Here are some of my favorite photos of my mother:

Mom and her three siblings. From the left: Dana, Barbara, Claire (Mom), and Kit.

Mom and Dad (Peter), I think shortly before being married.

The classic family portrait: My brother Ian, Cleopatra (the dog), Mom, baby Andrew (me!), Dad.

The Fearon siblings, all grown up: Dana, Kit (back), Claire (Mom), and Barbara.

Mom and my brother’s dog, Opus … A.K.A., Mom’s granddaughter.

Mom … Claire Anne Pulrang, 1926 - 1997