Showing posts with label young women with disabilities. Show all posts

How I came across Harilyn Rousso and her latest work really deserves its own blog entry. So unless you are one of those select few who already know about that story, I guess you'll have to wait for that epic interaction to be told another time.

When I first read the title Don't Call Me Inspirational: A Disabled Feminist Talks Back, it simultaneously brought a smile and questioning eyebrow to my face. The smile was for the first half of the title, and the arced eyebrow for the other. While I have long been uncomfortable with being considered "inspirational," the combination of my social awkwardness and general cluelessness as a young person never revealed to me how I might address it. I smiled because the "Me" in her title was something I, until that point of hearing about the memoir, wasn't sure "I am allowed" to dissociate myself from. My smile was like when two friends secretly break a rule, and only they know about it.
But the second half of the title threw me for a loop. Sure in school I had taken history, sociology, and psychology classes about women and gender studies..if you were really interested I could talk your ear off about feminist theories. Having gone to a predominantly female college it was difficult to avoid the culture of women who had a heightened awareness of their gender. Sure, I thought and still do think of myself as a feminist. Being fortunate to have powerful female role models both at home, in school, and among my friends - it never crossed my mind to think of myself as anything other than a feminist. But "Disabled Feminist" ? Say Whaaa??

I looked forward to reading the book because I knew that I would learn a thing or two. My knowledge of Harilyn's background after doing Google searches made me all the more curious about who is this gimp of a woman with cerebral palsy talking back to people? And what is she talking back to people about? Why is she giving me yet another label to think about? When all was said and done I did more than just learn a thing or two while reading the book: I was comforted. 
Most of the time when we read memoirs it's about how that individual came to achieve what s/he is best known for. Be it political figure, civil rights leader, Hollywood stars, musicians etc. - we are reading to follow the trail to their spotlight. Those are all spotlights that we probably fantasize about in dreams, or we share them while naked with the steam from hot showers as our audience. Harilyn's memoir, a collage-structured literary work, allowed me to follow her trail to being human. As a young woman with a disability who has only recently been okay with thinking about herself as disabled, and only recently began working with other young people with disabilities - Harilyn's collection of stories didn't just make me feel 'normal,' it made the concept of 'normal' accessible to me in a way it never has.

"The pleasure of self-recognition overpowered any feelings of abnormality and self-disgust...I wish I could say that this painting "cured me" of my negative attitude toward my right hand, but it did not...There is no quick-fix for a lifetime of self-hatred, only slow healing" (104). There is a young child in me that still waits for mom to tell me these words, and I didn't even know that child was there until I read Harilyn's story. Whether it was about buying her wedding dress, going on dates, falling in love, claiming her disabled body, being "the only one" - Harilyn let me know what was to come in my future (or what could come). This was comforting because I hadn't experienced someone telling me okay look, these problems you're just now coming to grips with aren't going away any time soon. But you can still kick-ass doing your thing while telling people to piss-off. You can still pay rent, eat McDonald's french fries, and enjoy a margarita. You reading these words might think "well d'uh obviously" but when have you told those words to someone else? And then explained to them how you do all those things? Did you talk to them about all the things everyone thinks they're not *really* supposed to talk about?

There are frequently moments in Harilyn's memoir where she writes about experiences that I had cataloged in my mind as oh that's just me being a freak. Don't talk about it with your friends because they won't have a clue, and won't know what to say in response. Her humanizing language and clarity with which she writes put an exchange between a beggar and a cripple in a socially aware context. It gave me some insight into why I prefer being alone with myself. It told me that my sensitivity I sense around power and dependency in a relationship are not me being paranoid, or me being just another annoying girl. It revealed to me my own nerdy ego: "The prevalence of disability stereotypes when I was growing up convinced me that I would never find a partner or have children, so achievement in the classroom and the workplace became central to my identity" (39). It gave me hope that right now I am not just going through some 'disability-loving-phase': "Longing is a powerful motivator, and my shame about so much I had learned to dislike about myself has diminished with both age and my involvement in the disability rights movement" (33). Harilyn is talking back to the silence of issues unspoken, to the young people who are hesitant about being loud; she is talking back to let readers know they can talk back too.

If you are looking for a book that takes you on a journey and forces you to question yourself, the way you interact with others, and most compellingly your own flaws - read this book. During a book group discussion, I decided that this isn't a book that should be read just among young girls or women with disabilities. It needs to be read by those without a readable disability, men with disabilities, able-bodied people, the parents of girls with a disability, feminist scholars, civil rights activists... it needs to be read because Harilyn is talking back to all of us, and damn is it high time that we listen up close.

There they go again, Easter Seals MA - helping to lead the way in an area where not much work has been done in. As I've learned the organization's history, I admire their forthright and forward thinking pattern. Whether it's advocating for early childhood intervention, or creating a program that loans adaptive technology, or training babysitters to care for children with special needs - Easter Seals MA leads the way off the beaten path. And I'm pretty sure it's not just because they are a bunch of liberal-Massachusetts-radicals - but because they know it's the only way we'll ever really be able to make progress together. They've always been brave enough to get a little uncomfortable and that is something I quite admire. So this program & conference I helped to coordinate was really not too surprising from many other trailblazing tendencies the organization pursues.

Two weekends ago I had the privilege of spending the weekend with sixteen other women, twelve of whom were members of a one-to-one mentoring program to empower transitional age young women with disabilities. Oh and let's not forget we had ten guest speakers too!
In a previous post I admit in a video that I don't really have a defined understanding of what it means to be a woman with a disability. To be honest? I don't think I'm supposed to have a set answer. 

For someone who likes crystal-clear-cut answers, structure, and adores excel spreadsheets - the fact that there was no epiphany moment where I came across the answer was a little difficult for me to get around my head. From our adaptive yoga instructor I learned that being a young woman with a disability involves being okay with who you are right at this moment. Whatever your body can or cannot do doesn't matter, because when we are mentally in-tune with our breath there is an attention to being connected with our limbs that (for me) wasn't always something I jumped to do. From our speakers on advocating for health care needs, I learned that being a young woman with a disability means that when we know what works for us - we fight for it and we ask for it, not because we're conceited pain in the ass patients, but because that's our right. From the author who read from her memoir, I was relieved to find out there is someone else who knows what it's like to be raised by a mom who wanted to "correct" those "weird" physical habits that come with having a disability; and someone who struggled to connect with the woman who looks back at her in the mirror. From our presenters on overcoming ableism, I learned that being a young woman with a disability means I need to be more attentive to the society I live in, and to the structures that are in place. Just because systems are in place doesn't make them right, and it certainly doesn't mean I don't have a role in changing those systemic behaviors.
The list of take-aways goes on and on. And outside of the presentations and workshops I learned loads from the mentors and mentees! There is a young woman who is trying to find a way for her passion as a motivational speaker to be a bigger part of her life than it currently is. There is a young teen whose excitement at being surrounded by other women with disabilities was something I wish I was brave enough to have owned up to when I was her age. There is a young woman who is thinking about being the next Ms. Wheelchair. There is a young woman who kept telling me that she felt like she was with family, though this was the first time we were all together.

As I was writing training manuals, various program hand-outs, emails and inviting guests to speak, I always felt like I was overusing the word "empowerment." I cannot tell you how many times I opened Thesaurus.com and typed in "empower" "empowerment" "empowering" only to be incredibly disappointed. Because none of those words Thesaurus popped up were good enough for me! None of them captured what I thought it meant.. which of course led me to think that I didn't know what the word 'empower' means! In my mind I was not out to create a mentoring program/conference experience that "allows" or "authorizes" or "validates" or "establishes" a young woman's ability to lead her own life as she wants. And nor was it about "permitting" her disability and her gender! Because I can tell you in one sentence what this conference was not about:

It was absolutely not about young women with disabilities asking permission to do whatever she desires with her life.

So that's why I began and ended the conference with the same activity. At the beginning I asked each attendee to fill in the blank "An Empowered Woman Is..." with one word, and then at the end of the conference we did the same activity. The point isn't necessarily what word that was written, it's that the individual fills in the blank for herself and for her own reasons. Little did I know that by planning that activity I was actually, in the end, telling myself the answer for what it means for me to be an empowered young woman with a disability.

This is a community of incredibly strong willed individuals, they've taught me that there is no square box that we were each meant to fit in. And maybe the whole point of being an empowered young woman with a disability is that I am brave enough to face the unknown, be in control of my own definitions, and life direction... Whatever that might mean and wherever it might go - it means that I am resourceful, opinionated, strong, and wise enough to call my own shots and do whatever I wish to do. Because ultimately, I know I need no one's permission to try.

If you are like me and you over-analyze everything until it is a mushy pulp, then maybe you are also confused about what it means to be a woman with a disability.

Before I begin: there are many other bloggers out there who focus solely on this topic, hundreds of articles, and academic research that is being done in this area. I am just going to attempt to fumble my way through what I think it means, or doesn't mean, or something..

*BIG SIGH* Here we go:

• I think it means that I am particularly hungry for all things self-empowering. If you asked me to define the word self-empowerment I might give you some vague definition that has to do with... achieving goals, self-motivation, confidence, and knowledge to tackle the challenge at hand. Throw that all into a pot, wave your magic wand and voila! 
• I believe it means I sometimes get condescending behavior and 'social norms' for how women are treated in society mixed-up, A LOT!
• It means that I have yet to find high heels that don't look totally goofy and dumb when I wear them sitting down.
• Being a young woman with a disability means I am, personally, staunchly averse to all behaviors related to "playing the victim" ... even when I may in fact be the victim in a situation, sometimes I would prefer to pretend that I actually am not.
• It means that via nature's natural roles I find myself easily able to listen and empathize with others.
• It means that it is important to me to be unafraid to take on leadership roles.
• It means that it is even more important for me to be able to speak-up!
• Sometimes I might misconstrue criticism as a personal fault, or as a fault of the disability - and be at a loss for what to do or how to respond. Many times I might be overly sensitive but you, of course, would never know.
• I often think about the way I adapt to situations and always leap at the accommodations that are the most elegant, diplomatic, non-confrontational, non-disruptive. 
• I sometimes wish to blend in.
• It is important to me that I know my choices, options, and how to access all of them. Also that they are easy to access and not a logistical pain. 
• It is important to me that others in my situation are given the same opportunities, same access, same boosts of encouragement. If they are not I automatically feel bad, that I did not do enough to help others achieve; part of my achievement means that others are also able to achieve.
• I get frantically nervous about whether common practices of chivalry are done out of social politeness or out of assumptions that I cannot fend for myself.
• I am naturally self-reflective and uncomfortable with some of the things that I discover about myself. Those thoughts hang out in my head for a while until something else 'more important' knocks it away. 
• It is important that someday I am comfortable with being vulnerable, because I have recently discovered that is a powerful experience. However it is something that I would rather first flee from than face.