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Who Should Speak For The Disability Community?

nothingaboutus

On any given day, the feeds of my social media accounts are brimming with resources, stories, and motivation about disabled people: parenting tips, educational advice, how to work with someone who has a disability, etc. About us, but too often not including us. There are countless communities geared towards supporting parents, family members, and professionals, sharing words of encouragement on how to be the best advocates for the disability community. And while I understand such support networks are usually well intentioned, in many cases, they take the power out of the hands of the people who know themselves and their needs best: people who are actually disabled.

Don’t get me wrong – allies, or what I refer to as advocate-allies, are incredibly important to advocacy efforts. “Ally” implies being supportive, while “advocate-ally” paints a more accurate picture of people who join in along with self-advocates. And true advocate-allies deserve the utmost respect. But a real advocate-ally is someone who doesn’t overshadow the voices and efforts of the people who experience being disabled every single day.

Of course, as a disabled child is just beginning life, parents and professionals have a responsibility to play a key role as advocates. Obviously, a four-year-old wouldn’t be able to discuss medical procedures or know what kind of environmental access modifications are needed, so we can hope that parents will make sound and informed decisions on their child’s behalf. But as disabled children grow older, if they can communicate effectively in any way, then the primary goal should be to embrace the child’s form of communication, working with them to develop their own voice for advocacy.

It can become problematic if parents or professionals are reluctant to relinquish their positions of authority and move to the role of advocate-allies, advocating alongside, instead of on behalf of, disabled people. Therefore, as important as it is to step up as advocates, it’s more important to know when to step down.

My feelings on this are rooted deeply in my experiences. As a passionate self-advocate, I owe so much of what I’ve learned to my parents. Even before my birth, my mom and dad were my number-one advocates, ensuring my well being and making decisions they felt were best. But as soon as I was old enough, I was routinely involved in all conversations and decision-making that directly affected my life. My parents continued to advocate not for me, but with me. Nothing about my disability was kept secret from me. While it was tough to face reality at times and I had to mature much faster than so many people my age, I can truly say I’m grateful for how my parents raised me. They remain supportive and are always there to advise me, but they laid a strong, solid foundation for me to uncover my own voice for advocacy.

Even so, I can imagine from a parent’s perspective that it can be incredibly difficult to turn off the instinct to speak for your child. When I was little and would try explaining something to my parents, I’d always declare “You’re not in my body. You don’t know how I feel.” And though I’m now in my 20’s and I learned some of my best advocacy skills from my mother (who also has a disability), she still sometimes starts to speak for me out of habit. We just laugh when this happens, because I know she just can’t help being my mom, but ultimately, both of my parents respect that I speak for myself.

Advocate-allies will be of the most benefit by modeling traits and attributes of a good advocate so that as children get older, they can become effective self-advocates. I’d love to see more families and professionals banding together not to speak for the disability community, but instead to encourage the young disability community to build up self-awareness and self-confidence. Doing so will contribute greatly to raising generations of empowered self-advocates who are in tune with their needs and their bodies.

Unfortunately, I don’t believe this kind of support occurs as much as it should. If so many people are all about advocating for inclusion, then why are people who actually have disabilities so frequently excluded from the equation? Though I haven’t crunched the numbers, it seems to me that the existence of platforms for advocate-allies far outweigh support systems needed for the empowerment of self-advocates. I believe this points to an urgent need for powerful advocacy communities to redirect their focuses on building up generations of self-advocates. In turn, this will encourage lawmakers, major organizations, and society at large to value and more seriously heed what self-advocates have to say.

So don’t count us out! A lifetime of support is essential, but only when self-advocates are given the chance to be the number-one advocates for ourselves can progress in the disability rights movement truly be made.

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Emily is a passionate self-advocate who recently graduated summa cum laude with a B.A. in English from Adelphi University on Long Island, New York, where she was born and raised. Using her love of writing and communications, she is just beginning her journey on a career path towards creating positive change for the disability community. Emily blogs at Words I Wheel By where she writes about her experiences as a disabled 20-something and explores disability rights issues. She loves connecting with people, and invites you to like Words I Wheel By on Facebook and follow her on Twitter @emily_ladau.

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  • http://disabilitythinking.blogspot.com/ Andrew Pulrang

    This is so well written and such an important topic. I hope it finds its way to more “professional” sites and especially “special needs parent blogs”.

    • Emily Ladau

      Thank you, Andrew! That would be exciting for it to reach the groups that I’m truly focused on addressing.

    • http://eichefam.net Paul

      I plan to post about it myself, being a parent-advocate. (Although I tend to prefer just “Daddy” to my little one :)

  • KaraSwims

    So many great points. I am both a self-advocate and a professional in the field. I’m amazed but remain focused on how many times I will bring up in a meeting the need for involvement of other self-advocates. I almost feel like the “Nothing About Us Without Us.” should be hung in the walls of every disability organization…it’s a reminder that needs repeating….and that’s ok as long as it’s respected.

    • Emily Ladau

      I’m in a similar position to you, Kara, and I always find that I cannot stress enough how crucial it is to have self-advocates involved.

  • Gary Dietz

    Emily,

    Wonder

    • Emily Ladau

      Thank you, Gary! Glad you liked it! I find it’s so important not to discredit parent-advocates who truly understand how important it is to embrace their child’s forms of understanding and communication.

    • http://eichefam.net Paul

      Excellent point. I am a parent-advocate, being the parent of a disabled child, but as she grows (she’s five now) we educate her as much as possible on the procedures she needs.

      I’ll give you an example. She’s had to have foot surgery twice to correct clubfoot. The first time she was too young to have any say, but we believed in giving her the chance to walk. We didn’t know whether or not she would be able to, but the benefit outweighed the risk, we thought.

      When it came time for the second surgery, we asked her input. She knew what it meant to have surgery – the recovery time, the casts, the pain – but she insisted that she would go through with it. “I want to walk,” she said. That desire and determination are what drive her every day in physical therapy, and I’m glad we involved her instead of just deciding for her.

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