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Disability Pride Is Not About Us If It’s Without Us

By Emily @emily_ladau

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Disability Pride Is Not About Us If It's Without Us!

A recent New York Times article features Mike LeDonne, who claims to be representing the disability community in pioneering the organization of Disability Pride NYC. (In actuality, the parade’s website has a video from a 1993 NYC Disability Pride march.) What happened to “Nothing About Us Without Us?” This has long been the motto, the rallying cry, the siren call that drives the disability community. Our history is one full of being spoken for by non-disabled people who do not truly know what it is like to live our lives. Time and again, we have had our thoughts, feelings, and voices discounted by people who believe they know better than we do about our experiences. The article ultimately reduces the disability community to nothing more than “these people.” “These people [who] are not to be pitied.”

Where in the article is there any mention of the rich disability history that disabled people hold so dear in our movement? Why is there no discussion of the hard work going into disability pride parades that have already been taking place for years around the United States? Who is this parade truly serving if the focus (especially in the article) appears to be a celebration of LeDonne’s daughter, while other disabled people seem to be an afterthought in efforts that are purported to celebrate an entire identity?

Non-disabled parents of disabled children can and should take pride in their children, loving and accepting them for who they are. As such, I respect LeDonne’s intentions and admire his devotion to his daughter. However, I am concerned that this grandiose gesture of a parent’s love for his disabled daughter is negating the efforts of the population whose pride is meant to be celebrated.

None of this is for lack effort on the part of disabled people. For quite some time, well before knowing of LeDonne’s plans, several of my disabled colleagues have been working on a grassroots effort to set a disability pride parade in motion in New York. Since attempting to connect their work with LeDonne’s, he has taken credit for developing the idea, thereby overshadowing actual disabled people. The New York Times article is clear evidence of this.

Plenty of disabled people have tried to be, and are still trying, to be involved. For instance, I am incredibly glad to see that the Commissioner of the Mayor’s Office for People with Disabilities (MOPD), who I deeply respect, has been quoted in the article. But, I am saddened that there is no mention of the MOPD Youth Council. The Council consists fully of people who are actually disabled and was formed in November of last year, largely to work on the pride parade. (In the interest of full disclosure, I’m a proud part of the Youth Council. I was invited to be a member and attended the inaugural meeting.) Even so, I humbly acknowledge the members of the disability community who have been working on disability pride efforts long before I joined in.

The Disability Pride NYC mission statement on the website proclaims that the parade is intended “to promote inclusion, awareness, and visibility of people with disabilities.” And yet, I know that LeDonne has been asked numerous times by members of the disability community also working towards a pride parade to work with us and not on our behalf. We wish LeDonne would be more open to acknowledging and collaborating with the disability community whose work began long before his, because really, a disability pride parade is not a non-disabled person’s show to run.

Of course, I do believe that no minority community should ever be without the ardent support of allies. As such, it is more than okay for non-disabled people, especially parents of disabled children, to work closely with the disability community. But if part of the goal of Disability Pride NYC is truly, as the website states, “to support people with disabilities in whatever way we can,” then where is the support of the efforts of disabled people? Planning a pride parade that is supposedly meant for the disability community while barely even consulting us does not feel supportive. It should be the other way around. The disability community can and should be at the forefront of this event, with people such as LeDonne providing support.

For disabled people, a pride parade is about so much more than being “a lively public musical procession that celebrates people whose distinctiveness is usually described in negative terms.” This sentiment does not a pride parade make. To me, this description sounds more like throwing a party for someone because you feel bad than hosting a parade honoring the world’s largest minority. A true disability pride parade should be a celebration of our humanity, of rights hard won and rights still being fought for, of life and love and empowerment.

While I can appreciate what LeDonne is trying to do, it’s important to note that any time a non-disabled person asserts that they are helping the disability community while simultaneously taking the lead, it contradicts the progress that has been made in the disability rights movement. Disability Pride NYC cannot and must not come to fruition without people from the disability community at the helm.  I have seen that it is possible to collaborate and create a unified front among people of all abilities without taking away the agency of people who actually have disabilities. It is how we, as a community, have come this far. But until the expression of disability pride is truly about us, we’ve got a long, long way to go.

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