Finding a True Sense of Community Within a Community

I’m coming off the high of spending five days in my absolute favorite place in the country: Washington, D.C. I know – it’s not exactly everyone’s top choice of locations given the current political climate of the United States. For me though, it’s so exhilarating to be in a city full of people who release the buzz of purpose and potential into the atmosphere. It may sound silly, but being in D.C. makes me feel like I’m in the Disney World of disability rights advocacy.

I went there to go a conference hosted by the organization where I interned over the summer, the Association of University Centers on Disabilities (AUCD). There’s nothing quite as exciting to me as being surrounded by about 700 people connected by involvement in disability rights advocacy and making progress within the disability world. When I’m in the presence of amazing, established advocates and budding ones like myself, I see real potential to improve access and work towards eliminating social barriers for the disability community. As you can see, I want to be as positive and optimistic as possible about social change.

What I wonder, though, is what happens to the energy after meetings of the mind come to an end and conferences come to a close. I left the AUCD conference having made wonderful connections and some great new friends. I felt energized and found my passion for advocacy renewed. And from the looks of it, I was far from alone in this excitement. A conference as empowering as AUCD’s clearly generates fires within people to return to their daily lives and continue to pursue progress. However, I wonder what kind of progress could be made if the energy and passion channeled within the community of the conference halls could carry beyond that.

Essentially, what I mean to say is that I know there can’t always be huge groups of advocates in the same place at the same time, but I’d love to see what would happen if the collaborative mentality could be there 365 days a year. In the case of AUCD, collaboration is always there, even though members are spread out across all 50 states. That’s what I love about the organization – the efforts don’t stop just because everyone isn’t together under one roof.

However, I find that all too often, I meet advocates from other places, we bond over our passion, and then go right back to smaller, isolated advocacy communities.

The AUCD conference reminded me of how important a true sense of community is to successful advocacy. I found it particularly poignant that the conference theme was Promoting Inclusion in an Increasingly Diverse World, because a sense of community was fostered within the celebration of diversity. Acceptance of diversity won’t happen without understanding the common ground we occupy.

I’m sure you’ve read similar sentiments a million times before, because I know I have. But I keep waiting to see more people taking it to heart. I’m so lucky to call myself a part of some amazing disability advocacy communities, including some great people in the AUCD network, but I’d love to see this sense of community, this sense of connection, grow within the existing community. So much progress has been made since the passage of the Americans with Disabilities Act and other important disability-related legislation, but there is so much more to be done, and no one can do it alone.

November Disability News and Blog Post Round-up

Not a day goes by for me where I don’t come across articles or blog posts related to disabilities that command my attention and make me stop to think. Last month, I did a round-up of some of the most interesting and thought-provoking things I read regarding disabilities. Though I had wanted to do a round-up post on either a weekly or bi-weekly basis, time got away from me a bit. However, I didn’t want to let this month go by without doing another round-up, because I had lots of fun putting it together last time! I’ll link to the article or post and include a brief explanation of why I choose to share each piece. I hope you find things that resonate with you within my lists.

Articles

• What’s the deal with the onstage sign language interpreters at music festivals? – In my Disability and Social Justice class during college, one of our assignments was to find out more about how public places and venues accommodate all kinds of disabilities. One group called concert venues to see what the response would be if they requested sign language interpreters. Unfortunately, they were sent in circles among various venue representatives and not one person they asked had any useful responses or knowledge of how to get an interpreter to their venue. This article is all about LotuSign, a company that’s working towards changing this problem.
• Disability Studies: A New Normal – This New York Times article gives an interesting overview of the ways in which disability studies can be applied to a wide range of career paths. While I don’t think the idea that anyone can become disabled needs to be called “foreboding,” I really shouldn’t be picky about semantics here because I think this article is a great read.
• Gas Stations Designed for Easy Fueling – Though technically a blog post, I’m counting this as an article because it’s incredibly informative about new accessible technology for gas stations. When I used to go on the road with an old friend who uses a wheelchair, he often had issues getting assistance at stations that weren’t full service. I hope this could be the future solution to that problem!
• The Boden girl, my sons and a heartfelt message to a world that wrote them off, by Amanda Cable, whose twin boys were born with cerebral palsy – This article addresses the controversy (which shouldn’t even be a controversy) about the gorgeous little girl with cerebral palsy who is a model for the children’s clothing company Boden. This mother writes eloquently and honestly about why people need to stop assuming that the lives of disabled people aren’t worth living.

Blog Posts

• CP Shoes post on Frida Kahlo – First of all, if you haven’t heard of CP Shoes yet, allow me to introduce you to one of my favorite blogs in the universe. I have had the pleasure of spending a bit of time with the blogger behind CP Shoes this past summer, and she is awesome. Her blog tackles disability rights advocacy by way of featuring photos of shoes affected in various ways by the walking patterns of people with disabilities. Not only did I enjoy the little history lesson about Frida Kahlo’s disability, but also I loved the quote shared at the end of the post. It hit me hard, in a good way.
• How To Talk To A Cripple – Spashionista is a blog that covers both disability and fashion. What’s not to love? This post is about political correctness in a way that really got me thinking! The last line of the post says it all.
• I resign my roles at Autism Speaks – If you’re unfamiliar with the major problems with Autism Speaks and their “advocacy” efforts, educate yourself! Autistic people are fighting back hard against Autism Speaks, and I couldn’t have been more proud to read this blog post from Autism Speaks’ only Autistic member on the Science and Treatment Board that revealed why he chose to resign.
• How To Get Over Your Body Image Issues And Dance Naked – I recently shared some of my personal struggles with body image in a previous post, and this story really resonated with me. Not sure I have the courage to dance naked, but I’m definitely on a personal journey to get in touch with my “multidimensional awesomeness.”

I hope you found some interesting new reading material here and I’d love to hear your thoughts on the articles and posts I listed! If I missed anything you think is worth checking out, please don’t hesitate to share it with me!

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New Guest Post at Handicap This!

I’m really excited to share my latest guest post that I’ve written for the Handicap This! blog on how popular media depicts disabilities. You can read it here: How Popular Media Depicts Disabilities. This is one of my absolute favorite subjects to research and write about. And though the show Push Girls, which I discuss in the post, is not on television for the fall season, I was inspired to write about it as a (mostly) positive example of a portrayal of disability in the media. After checking out my post, I hope you’ll take some time to explore the many other wonderful posts on the Handicap This! blog and to read all about the Handicap This! stage show!

Disability News and Blog Post Round-up

Every week, I find myself inundated by disability news and information…and I love it. Of course, I don’t mean that I love it when I come across stories of discrimination or mistreatment, or when I read articles that – in my opinion – misrepresent disabled people. Rather, I value the opportunity to access the wealth of resources and opinions on disability that the Internet has to offer. As a bit of an experiment, I’d like to share a round-up of disability-related articles and blog posts from this past week that resonated with me or piqued my interest. I hope you’ll find some food for thought within my lists.

The idea for this was inspired by the amazing monthly posts on disability news from Down With Dat, a wonderful blog focused mainly on Down Syndrome. I highly recommend you check out the list as well as the rest of the blog! (I actually just discovered that my post on the Michael J. Fox Show is included this month!) I’ll be sharing a much more brief list than what can be found on Down With Dat, limiting it just to what I’ve found over a one week period, and I’ll include a brief explanation of why I choose to share each piece.

Articles

• Spurned Bride Turns Wedding Into Party For Disability Group – Now, I’m not usually one for “inspirational” stories related to disabilities, but this is actually wonderful to read how a negative can be turned into a positive.
• Airlines mishandle wheelchairs, strand disabled – I’m always worried about traveling with mobility equipment, and unfortunately, this definitely reinforces those worries. However, I think the video accompanying the article is quite well done (except I don’t see closed captioning). It does not sensationalize traveling with a disability, it includes perspectives from disabled people, and it highlights airline travel problems without heavily playing the pity card. Do you agree?
• Countering Discrimination – But Why Is Disability Discrimination Still Rife in 2013 in the UK? – Provides some all-to-common examples of discrimination that occur due to social attitudes, and calls on the UK government and disability organizations to campaign for “promote awareness that if someone has a disability then it does not mean that they are any different to ‘normal’ people.”

Blog Posts

• A Cup Holder that Holds too Much or Not Enough – This post is by a wonderful disability advocate who I’ve had the pleasure of speaking with. She shares an experience of being stigmatized because of her disability that shows just how far societal attitudes must go to end disability discrimination. Her writing resonated with me for hours after I read it.
• Taking up too much space – I actually can’t quite put into words how strongly I connected to this post. It encapsulates emotions that I experience time and time again when I’m out in public and I’m tripped over, asked to move, over-looked, used as an armrest, etc. There was a bit of a sense of relief that I shared with the writer as she let it all out.
• Spina Bifida: Q & A (Week 2) – Mary Evelyn, the blogger at “What Do You Do, Dear?,” is writing posts every week this month answering questions about spina bifida based on her experiences with her son, Simeon, as part of Spina Bifida Awareness month. The reason I love this is that she’s inviting curiosity and encouraging open-mindedness, which is a key to disability acceptance. Also, Simeon is super adorable and the blog has great photos!

I hope you found some interesting new reading material here! Let me know if you’d like me to continue doing this, and perhaps I’ll make this a weekly or bi-weekly venture. If I missed anything you think is worth checking out, please don’t hesitate to share it with me!

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Why Curing Disability Should Not Outweigh Equality

An article recently published by Rachelle Friedman on the Huffington Post boldly asserts in the title: “’Paralyzed Bride,’ Speaks Out: More Than Equality, We Want A Cure.” Rachelle discusses experiences with pain and financial strain, two major issues that face many disabled people, as reasons why finding a cure is urgent. Even though she is technically only talking about people who have become disabled due to an injury, the article is written in such a way that it implies every disabled person should be focused on cures over equal treatment. She goes so far as to claim that 99% of people with spinal cord injury (SCI) want a cure over equal treatment. While I respect that the strong desire for a cure is Rachelle’s personal view, it concerns me that she writes as though she speaks for nearly all disabled people. While disabled people do share certain lived experiences, everyone is unique, and there is no one right answer to how to feel about a cure.

As much as I value the idea of a unified disability community, I think in cases such as wanting a cure, there must be a distinction between the immense variations of disability experiences. I can understand why someone who was injured would want to return to his or her previous state of abilities, but I cannot claim my views on cures to match those of people who became disabled later on in life, because as I said in a previous post on the complexities of curing disability, I have never known any differently. My view is quite different from Rachelle’s because I was born with my disability. However, I also cannot claim that my views are the same as 99% of people who actually were born with a disability. Although nearly every disabled person I know would not want to be cured, I don’t know every single disabled person in the world. And I definitely don’t know 99% of them. Therefore, I can’t say my feelings and the feelings of disabled people I know represent everyone’s sentiments.

I want to clarify that I agree with Rachelle’s point about wanting to ease disability-related struggles. She makes a good argument by noting some of the societal issues that need to be solved for disabled people: “the need for better medical care, better health coverage, funding for medical equipment and better accessibility.” Despite the fact that Rachelle and I have had very different experiences with our disabilities, I can relate to her in that I experience pain almost daily, I face accessibility obstacles almost constantly, and my family has incurred countless extra expenses. Would I change this if I could? Yes. But is painting a picture of suffering and desperation for a cure an accurate description of life for every disabled person? I don’t believe so.

I’m not naïve. I know I haven’t gone through a traumatic accident, but I do realize that becoming injured is scary and life changing in enormously difficult ways. I’ve even had an experience similar to lots of people who injure their spinal cords. In 2009, I had major surgery to correct an abnormal curvature in my spinal cord and had to wear a halo stabilization device for four months while it healed. After the halo was removed, I had to work through intense pain to re-train myself to do many things I used to do with ease. So, though I cannot put myself in Rachelle’s wheelchair, I can relate.

I feel her argument needs to be re-framed so as not to downplay how imperative equality is and so as not make it seem that all disabled people are living the “harsh realities” of distress and misery. It is true that emotional pleas are exactly what motivate society to join a cause for a cure, but I disagree with Rachelle’s concern that the fight for equality overshadows the fight for a cure. Indeed, the media often portrays disabled people as heroes who overcome tragedy (a theme that I find to be quite stereotypical), but there are tons of (usually equally stereotypical) portrayals of disabled people as having a “severely negative…quality of life.” I believe that no matter how many people share Rachelle’s views, the extreme desire for a cure should not outweigh the need for equal access and equal treatment. The desire for a “cure” should not come at the expense of the desire for equality, and vice versa. The two need not be mutually exclusive. Medical advancements can occur even when advocating for equality.

A cure could take years to find, no matter how much money is raised. Money can only do so much to speed up research processes. I know this firsthand because research has been done to determine the genetic origin of my disability, Larsen syndrome, and I’m relatively sure that in my lifetime, scientists won’t find a “cure.” In the mean time, and always, it must be a priority for all disabled people to be treated equally. We should not have to wait for equal treatment. It requires no research; there is no science behind it. Regardless of how disability impacts our lives, we all deserve equality and respect.

(Remember, this is just an opinion piece. I’m glad to hear all opinions in response, but please be respectful and give constructive feedback.)

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