Dating, Sex and Disabilities

So with Valentine’s Day approaching, I thought this would be a good one. As usual I’d like to direct you to an article first, but this time it’s happy one.

So in case you’re not up for an article today, basically Sarah has cerebral palsy and Steve has arthrogryposis multiplex congenita (basically, his limbs did not develop correctly and he requires a wheelchair.) They met in a British social group called “Outsiders” that helps disabled adults make friendships with each other. Steve said “It is very difficult…as a disabled person, it’s not easy to get out of the house, without being reliant on a carer – so it’s very difficult to maintain a healthy social life.” Sarah said “If it hadn’t been for Outsiders, Steve and I wouldn’t have met…I found it very difficult to find a partner, due to my speech impairment and shyness.”

I highly suggest reading the article in full because it really can give you quite a look into general social interactions as well as difficulties dating.

I’m not sure most have ever thought much about the dating lives of the “severely disabled.” I think the able find dating to be difficult enough as it is without worrying how a wheelchair, tics, hearing aid, cognitive impairment, etc. play into it. In fact the only three instances in media I can really think of is the movie “The Other Sister” which I watched back in 1999 and remember liking (although it received horrible reviews, but I was 9) and “The Brooke Ellison Story” based on the amazing Brooke Ellison of course (who actually hails from the the town over from my hometown,) and lastly Matt and Heather on 7th Heaven.

However, dating must be a minefield for many people in these situations. I can’t say I know of any able people who have dated anyone with a severe disability aside from a hearing impairment. Obviously disabled people are dating, getting married and having children all the time, however I don’t think it’s something we often think about. But I’ll definitely have to look into this further.

I’m currently at work and another intern just told me that a Columbia professor is actually holding a webinar on Valentine’s Day about sex and disabled people. She specializes in sex therapy and often works with disabled people in particular. Talk about a taboo topic of discussion. Obviously in certain disabled couples this is much more a non-issue for but in certain situations I’d assume this could be a pretty extreme issue, particularly in couples where the disability occurs after the relationship has started. I’m looking into this through the Christopher and Dana Reeve Foundation and well, it goes pretty in depth if you’re interested.

I think however, that this particular story shows us that people with disabilities are just as capable of relationships as anyone and for ableists this might be a surprise. We often see severely disabled adults and somehow sexless or as large dependent children. That’s not the case. The capacity for emotion is something I think may surprise some people.

On that note, I hope that everyone in the Northeast like me is surviving the snow and Happy Early Valentine’s Day!

So this month in Glamour Magazine…

Bet you didn’t think that would get in here did you? Neither did I.

I was catching up this week on some March Glamour…I had a coupon for a subscription, please don’t judge! It’s nothing against the magazine, just these sort of magazines in general (Quizzes on if I’m “too addicted to shoes” and a shirtless cover photo of Kate Hudson are not my usual thing.) But this issue was fairly surprising. Well one article was. I can’t get you a link because it’s not online but here’s a rundown by ABC News from back in January. But the article was about, Alexis Wineman, 18, better known as “Miss Montana.” If there’s one thing that you would expect in Glamour and not on this blog it’s the Miss America beauty pageant.

HOWEVER. I was amazingly surprised. The article was an interview with Alexis and her fraternal twin Amanda. Nothing too exciting right? However, Alexis is autistic. In the near-century of yearly Miss America pageants…thousands of women have competed for a tiara, and Alexis is the first

one to have autism. This Montana representative was not diagnosed until she was 11 despite having numerous issues early on. She couldn’t look people in the eye and at one point she says her only friend was her Winnie the Pooh bear who she’d bring to school to talk to, because that’s how she saw other children treating their friends. She still has a speech impediment. This honest interview paints an amazing picture about not only what living with (undiagnosed) autism is like, but what it’s like for a sibling. In this case, Amanda, does not have autism, in fact she skipped a grade, making the comparisons between the twins even more magnified.

Alexis describes her difficulties just being in Vegas for the competition, after all lights and loud noises can cause extreme discomfort and stress for people afflicted by Autism.

Alexis was declared “America’s Choice,” which in the pageant world seems to mean the people chose her as their favorite, leading her to place in the top 16. While she did not advance, it’s amazing the barriers people are pushing through.

I think it’s great that this is bring a lot of attention to autism, which is a very misunderstood disability among the public. However, I have to wonder if the pageant is capitalizing on ableism. Miss Washington, Allyn Rose, will be undergoing a double mastectomy to prevent breast cancer, which runs rampant in her family. Alexis’s talent was a comedy routine. In an interview she said that she didn’t have a lot of friends growing up because she was afraid of people laughing at her. She felt that by doing comedy people would be laughing with her. Perhaps that’s a really bright outlook on things. However, I have to wonder if these two contestants disabilities are being capitalized on to keep people from being turned off by the pageant. After all, many views about giving women numerical scores based on how well they wear a bikini are no longer as favorable as they were. While I do not in any way deny that these contestants are inspiring to the American people, I just wonder if they’re being exploited in a way. However, I’ll tip my hat to Glamour this month; it was a great article.

Bullying, Children With Disabilities, and My Brothers

I’d like to first direct you to this very short article.

Now aside from a few statistics that probably didn’t surprise you, this article doesn’t say very much about what happens to so many kids.

I haven’t mentioned this before but I have two amazing little brothers who happen to have a few learning/physical disabilities each. Both have Tourette’s Syndrome and ADHD and one also has epilepsy.

Thanks to two very persistent parents, an army of creative teachers and special-ed tutors and some necessary medications they are doing above and beyond at 18 and 20 what we thought was possible for them when they were in preschool. Both needed intense speech therapy to learn to speak and the youngest was hooked up to monitors every night for awhile. The oldest is an honors student at a great college now with little academic support for his needs. He even just started his own company. The youngest is awaiting college acceptance letters but out of ten hasn’t received one rejection (cross your fingers!). He’s going to be an engineer and his favorite class is physics. Basically, they’re pretty smart kids particularly in their areas of expertise. As I said, this was not always the case. Growing up with brothers that needed a lot of extra attention probably made my childhood a bit different from most but I wouldn’t trade it or them. Which brings me to the bullying.

My brothers were bullied.

I was bullied too (completely unrelated to them or their conditions).

Most children are bullied at some point.

However I think it’s different when it’s not for your clothes or your shoes or your weight (or in my case my hair and my height). When it’s about your ability, or in that case your disability it’s different. I learned to tame my wildchild hair and embrace it and figured out some snappy comebacks about my height but it’s not the same thing.

How do you keep from getting mad at 4 years old when other kids aren’t saying your name right because you yourself can’t pronounce it correctly?

How do you read aloud when called on in middle school when you’re still reading at a fourth grade level?

How do you keep your friends from chuckling when you can’t go to a sleepover at 13 because you still have to go to sleep at 8pm or you may have a seizure? How do you explain you don’t do well in 3D movies or some 2D action movies in theaters?

How do learn to stop clucking your tongue loudly or blinking your eyes rapidly in school so kids don’t notice you have tics when you’re excited or overwhelmed?

My brothers could not stop these things from happening. A handicapped child can’t just hop out of their wheelchair and a deaf child cannot suddenly hear. Yet they are made fun of these things. So while my hair and height made me stick out and maybe your glasses, puffy coat or really loud laugh made you stick out too, my brother was getting hit and pushed around in the hallway because his brain worked a little differently than their brains. So while you can get a new coat and contacts and learn to stifle your laugh if you can’t roll with it, he couldn’t change his brain. So he punched the bully in the face. It literally took physical violence from a disabled child to get them to back off.

I’m not saying any bullied child should have to change a characteristic about themselves to try to suppress bullying. I’m just saying in some cases a child may grow out of that characteristic or really learn to embrace it. However I feel that is more difficult when you’re bullied for a disability and can really only think to equate to it to being bullied for other isms (racism, sexism, etc.).

As I said, while these stories are still sad, my brothers are not people to be pitied. In fact they’d never label themselves “disabled” and most people who know them wouldn’t think they fall into this category. In fact I was pretty surprised they didn’t mind me writing this piece about them, I was worried they’d feel I was “outing” them. But they are wildly successful for any kid let alone ones with IEPs and I think that’s why they can take pride in the bumpier journey they’ve had. They are two of the most strong-willed, determined, funny, caring individuals I’ve ever had the pleasure of knowing. I will never really find the words to explain the great men they are becoming. However they had such cheering section helping them on their way to success, getting them past these bullies. They have relatively mild disabilities for that matter. Think of the disabled children who do not.

All I’m trying to say is, bullying based on disability is culturally ableist. While some will just say it’s some sort of Darwinian “survival of the fittest” and “kids can smell weaknesses, so just be stronger” is that really conducive to the century we live in? A school that goes by this policy is institutionally ableist. Disability should not be viewed as a “weakness” but as a difference. While it’s true kids will pick on others for being different, it doesn’t make it acceptable.

The Fear of Being “Crazy”

I’d like to start by thanking everyone who has read/commented/passed along this blog so far. I never thought a school project could be this fun for me.

Ok now before you read this I’d like to direct you to a CNN article about Ernest Hemingway’s granddaughter. If you decide not to read it, the one sentence synopsis is basically that there’s a very high occurrence of mental illness and suicide in the beloved writer’s family and Mariel has made a documentary about it. Mariel says that she “wanted this documentary to be an unveiling of her family history, and to give people permission to express their own ‘stuff,’ to realize they’re ‘not alone in the world of dysfunction.’

Now that resonated with me. No one wants to feel alone, particularly with an illness. However, when you get the flu, you have people take care of you (or you take care of yourself) and then you’re better. Even if you get diabetes, with proper maintenance, you can lead a pretty well-monitored but normal life. However, for most people, having a mental illness is not looked on like that. This concept that you’re mentally damaged if you’re diagnosed with things ranging from depression to schizophrenia to anxiety is a lot more personal than having diabetes or even cancer. We look at these things as personal flaws of character, whereas just plain physical illnesses we see as bad things that happen to us. It’s a very different mindset behind it.

Because of this, most would rather not tell their friends/family that they have a mental illness and need some more support. It’s a terrifying thing. People may treat you a little differently if you say “yes I’m diabetic, but I’m getting help,” whereas if you say “look I’ve been thinking about suicide, I’ve been diagnosed with depression, but I’m getting help” it’s likely to be a whole different can of worms.

This is some of what the article discusses. Mariel describes how she spoke to her sister a week before she took her own life.  “She was seemingly OK…But you never really know with suicide what’s going on in a person’s mind.” What I’m wondering is, if it wasn’t so stigmatized to feel this way, would people be more likely to confide in others that they needed help? 

I have several close friends who can say they have had experiences with mental illnesses. And each time I’ve heard “yeah I was depressed and I was cutting, I take antidepressants and see a therapist now and am improving” or “my anxiety can be so bad that I literally throw up every morning for fear of my day” or “I cannot function or sit still for ten minutes without taking Ritalin” I used to be shocked. I’ll admit to being shocked. Because I didn’t imagine these people, these wonderful people, as possibly fitting into the box of “mentally ill.” That feeling though can promote ableism and a lot has changed since I began social work school six months ago.

I work in a clinic counseling mainly pediatrics but I have some adults as well. When you’re a counselor people walk in and usually give it to you pretty straight. I’ve had people walk in and say “look I’m bipolar and I’m not taking my meds anymore because I don’t like it” and “yeah I attempted suicide two weeks ago” and “I’m bulimic and I’m not stopping until I’m 110 pounds.” The shock value wore off awhile ago. Because once you hear these things and then you hear them talk of not only their struggles and demons but their accomplishments and goals I can see that these are someone’s friends too. If they can have a mental illness and own it to me, their social worker, I want my friends to do the same.

I can no longer pass judgment on someone who had a mental illness happen to them. Most people don’t want a mental illness any more than a a person wants the flu. No one wakes up in the morning and says “yeah I think I’ll try hearing voices today. I want to be schizophrenic!” These things happen to people, just like the flu happens to people. No one wants to be so far outside the societal norm of mental health but they are. And they suffer enough living with that. To judge someone, to call them “crazy” and avoid them like it’s something you can catch is only making their lives harder.

So my message today is that if you feel someone you care about is having a hard time, or they say they’re considering therapy, or they tell you about a diagnosis, be there for them. I know it’s hard. We did not grow up in a society that accepts those who it doesn’t find “sane.” Overt and covert cultural and personal ableism is everywhere. But these “crazy” people that we act so scared of are your sister, your cousin, your best friend, your girlfriend, your father, your teacher, your reverend…they are everywhere and in many cases you don’t know it. They are functioning as best they can and working for wellness and should be applauded for that, not alienated. Perhaps if more people were aware of that, particularly in sub-cultures where mental illness is even more stigmatized (some people still believe exorcism is the way to go) there could be more help and acceptance for a very large part of our human population.

 

Handicapped Parking

I think this may be something we often forget. I had two instances last week with people who seemed to have forgotten why handicapped spots are where they are. Scenario 1: I saw a man walking past a bunch of empty handicapped parking spots from an otherwise very crowded parking lot. He was complaining to his friend about how ridiculous it was that the spots aren’t being used by anyone and he still can’t park there. How it’s entirely unnecessary for there to be these spots and how it “pisses” him off that “crippled people” get such perks. However, of course, he said this while he walked into the store.

Scenario 2: I was driving with an “able-bodied” friend and she pulled into a handicapped spot. I asked what she was doing and she whipped a handicap permit out of her glove compartment. She happily told me that since her Grandma is elderly, has some trouble walking and sometimes drives with her, she uses her pass for the parking privileges. Obviously, Grandma was not in the car with us. I’m now trying to decide who is worse here. Mr. Scenario 1, Ms. Scenario 2, or me, the person who didn’t say anything about it to either party? How many of us have taken advantage of parking permits that don’t belong to us? Or just parked there illegally because “we’ll only be a minute right?” Or just became disgruntled at the empty handicapped spots while we have to walk farther. If I’d heard Mr. Scenario 1 walking around the parking lot griping about how much they can’t stand African American people or women or Muslims would I have reacted differently? Probably. Obviously the word “crippled” touched a serious nerve there but it just seems like a different nerve. What we forget is why these people genuinely need these spots. According to the New York DMV these spots are for people with:

1. Use of portable oxygen;
2. Legal blindness;
3. Limited use, or no use, of one or both legs;
4. Inability to walk 200 feet without stopping;
5. A neuro-muscular dysfunction that severely limits mobility;
6. A Class III or IV cardiac condition (American Heart Association standards);
7. Severe limitation in the ability to walk due to an arthritic, neurological or orthopedic condition;
8. Restriction because of lung disease to such an extent that forced (respiratory) expiratory volume for one second, when measured by spirometry, is less than one liter, or the arterial oxygen tension is less than sixty mm/hg of room air at rest;
9. Any other physical or mental impairment not previously listed which constitutes an equal degree of disability, and imposes unusual hardship in the use of public transportation and prevents the person from getting around without great difficulty.

(http://www.dmv.ny.gov/broch/c34.htm)

Scenario 1 is overt ableism, you can see (and hear) that this man doesn’t respect disability rights…not to mention uses negative language. However Scenario 2 is more covert. Either way they both encompass the personal belief that disabled people don’t deserve accommodations and accessibility. Studies also show that people with negative feelings toward the disabled population in general are more likely to abuse parking, as demonstrated by their diagram below.

“Abuse of Disabled Parking: Exploring Persuasive Multimedia as an Attitude Formation Strategy” by: Mohamed Zamri Mohd Zain

 

So that brings me back to the picture above. Shouldn’t we, every time we have to drive a few more yards down to park, be grateful that we don’t need that spot? Because none of those conditions applies to me nor would I want it to for the benefit of a better spot, and for that I’m grateful. However the question there is should one, in turn, leave a parking space out of pity someone who has one or more of those conditions? Or is it out of  respect  for them, for their strength and perseverance in the face of constant adversity?

What Is The Ableism Project?

Well, the first thing you’ll notice is if you type “ableism” in Microsoft Word you’ll receive that dreaded red squiggle underneath. You’ll be directed toward “albinism,” “abeles” or maybe “abseils.” This -ism, unlike “racism,” “sexism” and “Anti-Semitism” is much less discussed, however it covers a wide range of disabilities and disorders and therefore, a wide range of people.

So the best way to define the Ableism Project is to start with defining “Ableism.”

“Ableism is a form of discrimination or prejudice against individuals with physical, mental, or developmental disabilities that is characterized by the belief that these individuals need to be fixed or cannot function as full members of society (Castañeda & Peters, 2000). As a result of these assumptions, individuals with disabilities are commonly viewed as being abnormal rather than as members of a distinct minority community (Olkin & Pledger, 2003; Reid & Knight, 2006). Because disability status has been viewed as a defect rather than a dimension of difference, disability has not been widely recognized as a multicultural concern by the general public as well as by counselor educators and practitioners.”

– Laura Smith, Pamela F. Foley, and Michael P. Chaney, “Addressing Classism, Ableism, and Heterosexism in Counselor Education”, Journal of Counseling & Development, Summer 2008, Volume 86, pp 303-309.

So there you have it.

So what is The Ableism Project? And better yet, who am I to be writing about this.

Firstly, I am not disabled.

I am a 22-year-old graduate student at Columbia University’s School of Social Work in New York City. I am taking a class (Contemporary Social Issues: Isms Lab) and we have a project. Basically, we, over the next three months are to add to our portfolio twice a week. The mediums we use are pretty much up to us, so as a self-proclaimed Twitter-addict, I decided to expand my 160 characters and reach out into cyberspace.

I want to know what you, your friends, your family and whoever else you know thinks about ableism. It’s a lot broader than you’d think so I’ll be posting twice a week while I’m on the lookout for it. But one thing I’ve already noticed in the last week of thinking about this is we often hear people out there in the world saying things and we label it “that’s racist!” “that’s sexist” but I’ve never thought “that’s ableist!” (although I guess neither has Microsoft Word it seems…)

So my first question is when you think of the word “disability” what is the first thing you see in your mind?

Because this sign is the first thing I see.