Disability, General, Independant Living, Judaism, Personal Care, Sexuality and Body Image

Finding My Voice: A Look Backward, A Look Forward, and A Request

Anyone who knows me will tell you that I talk a lot.  Loud, verbose, outspoken; these are adjectives that I don’t think anyone would deny me.

And yet, as of May 1 of this year, despite more than two years in public office, more than 15 years of leadership positions, and well over 25 years of public speaking engagements, you would have been hard pressed to find more than the occasional public record of my thoughts and opinions on anything.

It’s not that I didn’t have them.  As a liberal New York Jewish lawyer (at least according to this conservative blogger), I have opinions about just about everything, whether I have any business talking about it notwithstanding.

It is rather that I really didn’t think that anyone would want to listen to what I had to say.  Living in the echo chamber of my liberal, Jewish, disability activist world, I really wasn’t sure that I had anything unique to offer.  Nonetheless, after years of gentle urging, I launched this blog two months ago yesterday, first at www.matankoch.svbtle.com,and then this week migrating over to WordPress, where we are right now if you are reading this.

I have been overwhelmed by the response.  In the two months that we have been live, I have received over 3000 visits, including over 1000 to WordPress this week alone.  The comments, feedback and encouragement, along with the flattering shares of those who push my words to even larger audiences have truly moved my soul.  It’s enough that I encourage other people to take a stab at blogging, if you think you might have something to say.

I have also had the opportunity to find my voice, and share my opinions on topics about which I am passionate.  My three top posts, each of which has had well over 700 views, have each allowed me to speak to an issue that I feel is timely and important.

In “Chutes and Ladders”, I got the chance to explore with you my take on the most critical policy barrier facing employment of people with disabilities.  I was truly gratified by each of you that responded that, having been previously unaware of this pressing issue, you were interested in opportunities to change the paradigm.

In “From Objects of Sympathy to Objects of Desire” I explored with you the evolution in the societal conversation around the sexuality of people with disabilities, a critical component to understanding us as fully fledged human beings.  From feedback in some disability fora where it was reposted, I know that I was lucky enough to give voice to an issue which troubles many of us that is completely hidden from many in the able-bodied world.  Then, spurred by the powerful words of my friend Ariella Barker, Ms. Wheelchair North Carolina, I examined the effect that this distorted conversation has on the body image of people with disabilities, in “It Starts in the Mirror.”

Rounding out the top three, this week I had the opportunity to share the incredible power of my camp experience with you, and the benefits that I think that camp presents to people with disabilities in, “My Launch Pad.”  I have been incredibly moved by the reminiscences and kind words of so many of my camp friends who spoke of the positive impact that my inclusion had on their lives, and I will be following up in the near future with a post focusing on the amazing human element of my camp experience, highlighting some of the thousands of people that made my experience what it is.  Even more encouraging, the post is beginning to circulate among those who work in the world of inclusion, and I would love to see the net result be that more people are afforded the opportunity that I had.

But now we come to the request.  In the two months that this blog has been active, I have written more than 30 articles.  I encourage you to check them all out, if only because many of them were written on issues about which I feel very strongly.  That said, I’m running a little low on inspiration.

I started this blog because other people felt that they had topics on which they wanted to hear my opinions.  So, I’m asking you, my readers, to tell me if there other things that you would like to hear me write about.  I’ve set up an email address, matansblogideas@gmail.com, specifically for that purpose.

Please feel free to send me articles questions or thoughts which you feel could be good potential subjects for this blog.  I may not write posts about them, as I really don’t believe in writing on any topic unless I have something worthwhile to say, but I promise to at least respond telling you that a post is on the way or explaining why I don’t feel qualified to express a particular topic.

I am gratified to have had the opportunity to start some important conversations.  I fully intend to continue.  I gratefully welcome your help and participation in this mission.

Disability, Sexuality and Body Image

It Starts in the Mirror: What I Learned about Seeing My Own Beauty from Two State Pageant Winners and a Comedian

Ariella Barker, Ms. Wheelchair North Carolina 2014, is beautiful. I don’t mean beautiful for woman in a wheelchair, or beautiful for one in my social circles, I mean beautiful, full stop. I mean beautiful enough that she remained a topic of comment by my able-bodied friend long after we met her, at a bus stop, while standing in the rain, with his admittedly attractive girlfriend, in 2008. Am I painting a picture?

Not surprisingly, people notice this. Yet, as she chronicles in an intriguing blog posted yesterday by the Ruderman Family Foundation, people whom she encounters on the street find the concept of a beautiful woman in a wheelchair so confusing that they ask her if anyone ever told her of her beauty before. Clearly, the idea is so foreign, so alien, that they’re convinced that they have encountered a major discovery, a mystery of which even Ms. Barker must be unaware, and which must certainly have escaped the rest of the world. After explaining this, she writes:

Society needs to see the truth about disability. And, that is: We are beautiful. We are intelligent and educated. We are successful. We are sarcastic and funny. We are fashionistas. We are sexual and desirable. We are not a burden. We are an asset. We may use a wheelchair or have differently shaped bodies, but we are no different than the able-bodied.

She is absolutely right, and  I wrote on a related topic a few weeks ago, but I think that changing perception requires changing multiple narratives.

A few weeks ago, I encountered another blog post, this one from Ms. Wheelchair Florida 2014, Stephanie Woodward, whom I have never met, but who also appears quite striking from publicly available photographs. Ms. Woodward writes of the experience of growing up as a woman in a wheelchair:

So by the time you’re 12 and you’re reading Seventeen magazine where you’re learning that you need to start straightening your hair or no boy will ever find you attractive and you need to stay skinny if you ever want to be loved, you’re also hearing from every well-intentioned stranger that you’re broken and you need to be healed. There is something wrong with you and you need to be fixed. But you know you won’t ever be “fixed.” You’re walking like this (and eventually rolling like this) for life. You were okay with your life until the world started telling you that on top of being a completely imperfect tween like every other girl, you’re also broken – thus making you completely undesirable. …

This is what you grow up with. This is what you hear every day. This is why you pray that someday maybe someone will find you attractive. This is why you hope so f****** hard that someone will love you someday. And this is why when someone finally does show interest, you stay. You stay even though they beat the hell out of you. Because they said they love you when the rest of the world told you that you weren’t worthy of love. You stay even though they force you to do things sexually that you don’t want to do. Because, hell, at least they think of you in a sexual way. You stay when they threaten to kill you. Because you know you’re a burden and that being with a disabled woman is probably very stressful.

This young woman, literally a beauty queen, was so socialized to find herself unattractive that, for a time, she not only accepted horrible treatment, but had sympathy for her abuser, who was willing to put up with the “stress” of being with a woman with a disability. Ms. Woodward’s post reminds us both of the incredibly destructive expectations that society puts on women, and the particularly destructive self-image visited upon people with disabilities.

Given that feeling attractive is often considered necessary to present as attractive, it’s hard to envision addressing the problem identified by Ms. Barker without finding a solution to the one identified by Ms. Woodward.

I find the most hope for dealing with this problem in the words of British comedian Francesca Martinez. In a Guardian piece excerpting her book, What The **** Is Normal? by Francesca Martinez, Ms. Martinez recounts a romantic interaction with a fellow student in a comedy class, at a bar after one of her first class performances. Excerpted here, the dialogue begins with the man saying:

“I love the way your body shakes onstage. It’s electric.”

“Well, I hate the way it does that! It happens when I’m nervous.”

“You shouldn’t hate it. It’s you and it’s beautiful and different and musical.”

“But people think I’m different.”

“The only opinion of you that matters is yours.”

This hit me hard. For the first time, I hated myself for hating myself.

He spoke once more. “You are Francesca. Full stop.”

When I read this, I could empathize. Though Ms. Woodward’s piece points to the widespread nature of these damaging self perceptions, I have an easier time identifying with this comedian then with the two other writers, because, my generally symmetrical features and dark coloring notwithstanding, I have no doubt that I lack the looks to win a beauty competition. Like Ms. Martinez, however, I have been in relationships with people who assure me that my somewhat twisted and often shaking body is beautiful to them. And, like Ms. Martinez, I “hated myself for hating myself.” Or, if not hating myself, at least being certain that they were delusional in their opinions.

So what do I take from this? From Ms. Barker, we get a stark outline of a problem. From Ms. Woodward, we learn that it is a reciprocal problem, socialized deep in, even for the most attractive among us. And from Ms. Martinez, we find the first step in moving forward. Implied in her story is that she had to come to recognize her own beauty, and stop hating her body and its unique expressions, in order to accept that someone else might. It is hard to be desired until you can accept yourself as desirable.

I don’t know how this is achieved. I know that the Internet is filled with posts like this, trying to send positive body messages to young women. I don’t know if they work, and I certainly haven’t seen equivalent resources for men and women with disabilities, but it bears thought.

More basically though, I implore people to change their messages.

Ms. Barker and Ms. Woodward have literally won awards for their beauty, and yet, to read their posts, most often they receive backhanded complements at best. As a man, and one lacking negative features to which the able-bodied world reacts, I often hear very little about my appearance. despite this, even I also start from a basically negative self-image, physically speaking. I can’t really imagine the messages delivered a teenage woman with a disability that makes her look visibly different than our societal standard. I can imagine they must be pretty bad.

But Ms. Martinez’s experience, and my own, show how much difference a heartfelt positive assessment can give. In fact, I am willing to bet that, in our image conscious society, everyone, disabled or no, benefits from an unqualified acknowledgment of their beauty.

So I have a crazy idea. Why don’t we complement people more? Work on your delivery, to avoid coming off like a creepy objectifying stalker. Make sure that you have a relationship where it is appropriate. (It is probably not appropriate to comment on the features of professional colleagues or strangers.) But, beyond that, try telling people.

The Internet can tell me to love myself, and my mother will always tell me that I’m a handsome man, but as Ms. Martinez tells us, there is no real substitute for the experience of an attractive peer delivering us the message, unqualified and simple, “you are beautiful.”

Hear it enough, and you might start to believe it. Believe it, and you might start to act like it. And when you act like it, others will notice. Only then can we begin to solve the larger question of societal perception, one person at a time.

Like Ms. Barker’s message? You can donate to her trip to the national pageant by clicking here.

Disability, Sexuality and Body Image

From Objects of Sympathy to Objects of Desire: Are We Finally Ready to Embrace the Sexuality of People with Disabilities?

In the world after “The Sessions,” it may finally have permeated the general consciousness that people with disabilities have sexual urges, and even that they act on them. Less clear is how well we acknowledge as a society that people with disabilities can also be the objects of sexual desire, experiencing and enjoying a relationship of mutual attraction, not only spiritual or mental, but physical. This week I was presented with two stories that provided interesting insights. One left me despairing and mildly ill, the other troubled my inner feminist a bit, but left the disability activist/sometimes sexual person with a disability in me cheering.

I was truly troubled to find a story out of Minnesota this week about Jordan Knapek, a young man with CP going to prom. The author opens by telling us that we are about to hear “a story about how some of life’s best moments aren’t necessarily perfect.” The next 128 words proceed to focus on just how imperfect Jordan’s life is, focusing primarily on his limitations and his need for assistance. Then, we get to the heart of the story. In a tone reminiscent more of how one might talk about an eight-year-old then a 17-year-old high school senior, the author tells us, “Through his communication device, and in front of our camera, a secret got out. Jordan had been crushing on Rachel.”

Now, did Rachel return his romantic interest? Apparently not. Instead, the aspiring nurse said, “I just want him to have that high school prom experience.”

I will say nothing to impugn her motives. It sounds to me like a teenage girl with a big heart wanted to do something nice, and that really is sweet. It is hardly what I understand to be a high school prom experience, however.

My understanding is that usually when a guy asks a girl who does not fancy him to the prom, she usually turns him down, gently or not depending on the individual. Maybe he stays home and mopes, or maybe he bounces back, asks a girl where the interest is mutual, and has an actual high school prom experience. (I am taking no position on teenage sexuality, merely advocating that whatever prom experience two teenagers have, sexual or otherwise, should be genuine.)

Here, the article only tells us somewhat cryptically, “Jordan had to take in most of the night from afar, but his date did take him for a spin.”For Jordan, assuming that he aspires to real romantic relationships, I view this as a negative experience.

Finding real romance, especially for those of us that present to the world a little differently, is a challenge. In my experience, it requires some magical combination of awkwardness and fumbling along with confidence, assertiveness, and a real vulnerability and openness to rejection and heartbreak.

This experience began with a juvenile premise, the sharing of a “crush” with a third party, and ended with pure fantasy, the uninterested object of affection pretending to the bare minima of a date. This no more real than the high school girl who gives one dance to the first grader with a crush, but far less age-appropriate. I only pray for him that he gets to experience the real love of someone who is interested in him as a romantic partner at some point in his life.

This is not my biggest problem with this story, however. My biggest problem is that it typifies the image of people with disabilities as slightly infantile objects of inspiration, suitable for feel-good playacting, but not for real relationships, and certainly not as potential sexual partners.

Mere hours after I read this story, however, I came across a very different portrayal, one that gives me hope that maybe our journey as a society need not end with “The Sessions”, much less the story above.

I was killing time surfing the Washington Post during one of my physical routines, and I came across the news that the runner-up on the show Dancing with the Stars was a paralympian. Curious about this, I followed the link under her name and was brought to a very different story.

The story opens with a sizzling image:

“Purdy and Hough entwined themselves in more ways than you’d think possible throughout a steamy, ingeniously choreographed cha-cha on the season’s first episode. The twisting hips and tight, fast footwork posed no problem for Purdy, a competitive snowboarder.”

Not until two red hot paragraphs later do we read

 “she has abs of steel. Red-carpet looks. Sex appeal to burn, in a lithe body that’s perfect for the show’s skin-baring costumes. And those legs: Peeking out of her adorable gold-fringed cha-cha pants were gleaming metal rods leading to flesh-toned plastic feet, part Terminator, part department-store mannequin.”

Notwithstanding the cheesy imagery and the blatant objectification, which offended my inner aspiring writer and my inner feminist in equal measure, the first mention of disability comes at the end of a series of paragraphs practically dripping with sex appeal.

Now, this is not to ignore that the author follows the tired conventions of disability journalism, using inspiration porn expressions like “She has looked into the abyss, and clawed her way back.” Also, the very emphasis on the way that disability disappears creates a troubling link between sexual appeal and some idea of “normalcy” or passing, but, one societal problem at a time is enough for me.

Also, much of the midsection of the article is a fascinating look at the potentials of prosthetic design, not germane here.

She closes, however, with the following image.

“Tiptoing [sic] onto the stage for her contemporary-style dance with Hough, Purdy wore a simple silver dress with an airy chiffon skirt, the hem short enough to show her muscular thighs and sleek, jet-black shins, exposed metal ankle joints and rubbery Barbie-doll feet in a permanent point. . . . the emotional power lay in the way he and Purdy moved together, as if the dance floor were a private realm beyond reach of physics. And the final picture painted by the author captivates. She writes, “At one heart-catching moment, Purdy melted into his arms and he swept her around his back as if she were weightless. As if she were swimming through air.”

This paragraph describes beauty and power, eroticism and grace, and breathtaking chemistry, and does this not by ignoring the prostheses nor exalting them, but including them seamlessly in the captivating picture. The reader is captivated by the description this woman not because of her prostheses or in spite of them, but rather because of the whole picture of which they are a part. At the end of the article, Ms. Purdy says “I am not my legs.” This is true, but the beauty of this article is that it shows that the legs can be a part of, rather than apart from, the attractive whole.

Without question, this article, like *Dancing with the Stars* in general, is filled with the sort of cheap sexual theatrics of which I generally disapprove. At the same time, I am truly delighted to see the equality of opportunity in the way those theatrics are applied to a woman with a disability. If I have to choose between people with disabilities being portrayed as children, treated to romantic make-believe by their well-meaning peers, or being portrayed as the potential subject of sexual desire, I think the latter is infinitely preferable.

“The Sessions” taught us that people with disabilities seek meaningful sexual relationships. Maybe, just maybe, we are starting to acknowledge that these attractions can be reciprocal. One can hope.