Reyma McCoy McDeid
Author’s note: although several organizations- and my roles within them- are mentioned here, views and opinions expressed in this essay are solely my own. Most names have been changed.
Disability advocacy is utter hell.
As far as I can tell, it’s the only work that, the more one excels at it, the more likely they are to be punished without mercy as a result.
I watch my colleagues in the disability community across the country protest at their respective capitals, rally in the streets, loudly chanting things like PISS ON PITY and NOTHING ABOUT US WITHOUT US and, frankly, I’m confused because they are given awards for doing the same thing that I am demonized for — activism without apology or permission. Indeed, because of the particular type of disability advocacy I do, I have been subjected to nearly a year of harassment and character assassination delivered with the sole intent of destroying my career and leaving me, and my young daughter, destitute.
I, too, do disability advocacy.
But, unlike my colleagues described above, my advocacy isn’t necessarily centered on pleading the case for disability inclusion to society at-large. No, my activism is specific to addressing the racism and lateral ableism and exclusion that festers within the disability community itself.
It is one reason why, thirty years after the passage of the Americans with Disabilities Act (ADA), the disability rights movement still experiences so much lag in comparison to other movements when it comes to adjacent movements.
Thirty years ago, in March, 1990, disabled activists literally crawled up the steps of the nation’s capitol in the interest of bringing awareness to Congress’s lack of movement on the ADA, which was still a bill at the time. Less than four months later, but a full two years after its introduction, the bill was finally signed into law. Of course, the push for the rights of disabled people didn’t begin in 1990. Many steps had to be taken before the ADA first appeared in the District of Columbia, including decades of activism throughout the US — grassroots organizing, creation of disability-focused organizations, rallies, marches, collective commitments to emerge from the shadows and step into mainstream — led and centered by “white” society.
A movement that, ironically enough, was initially inspired by the Black civil rights work of the 1960’s but, almost immediately upon formation, systematically shut out Black, Indigenous, and other people of color (BIPOC) from decision-making roles, typically erased the efforts of BIPOC from disability rights history, and, invariably, ostracized and ostracizes BIPOC who attempt to engage in systems advocacy addressing race and racism within the movement.
I first stepped into the disability rights movement five years ago when I assumed the role of executive director for a then-failing Center for Independent Living (CIL) in Iowa. I was relatively young- thirty five, at the time, female, Black, autistic, and I was seen as a novelty not to be taken seriously. There was absolutely no historic precedent with regard to someone with my particular layers of diversity in a leadership position at a CIL and, since my particular CIL was about to close its doors, my colleagues presented me with the same pity a person might display when encountering the sickly runt of a litter of strays: “Awww, poor thing…”
“Awww, hang in there,” Shawna, the Statewide Independent Living Council (SILC) director for my state used to coo to me during my first year, as I navigated myself and my CIL through a state department of human rights complaint from a disgruntled and litigious former employee (who’d been terminated prior to my hire), sexual harassment by one board member, stalking by another board member, sabotage by staff who were disgruntled that they’d been passed up for my position, and, finally, a literal flood after a water main break that led to a necessary relocation for my CIL.
Several of my fellow colleagues in independent living (IL) joined Shawna in more or less hanging back and shaking their heads as I dealt with crisis after crisis. They feigned care and concern, but the veil lifted after I began to turn my CIL around and, by the time my CIL was awarded the organization of the year distinction from the city in 2018, Shawna had lodged a baseless complaint against my CIL with my Designated State Entity (DSE) and made it a regular practice to speak negatively about me to colleagues whenever the opportunity arose, including telling an audience at an Association of Programs for Rural Independent Living that my CIL was “greedy” and depriving other CILs in my state of funding, in spite of the fact that no funding formulas currently in use in my state allow for one CIL to take money from another CIL. In fact, the funding formulas used in my state existed long before I became a CIL director.
Curiously enough, people within IL who were aware of what I was experiencing began to quietly contact me to let me know that they were aware of what I was dealing with regarding Shawna: “She’s angry because you have forgotten your place and she likes to be the star of the show. Just step around her like everyone else does and keep doing a great job- hang in there!”
And I did — hang in there — for a while, at least.
That is, until the listening session I facilitated at the National Council on Independent Living’s (NCIL) behalf in July, 2019, as a proactive response to Bruce Darling — NCIL’s then-president — engaging in a racist and xenophobic tirade on Capitol Hill less than a week prior. His resignation twenty-four hours after the incident was necessary but it shone a bright spotlight on the bigotry the movement has tried so hard to ignore for so long.
The listening session- which was intended to provide a forum for BIPOC to share their stories of exclusion within the disability community, was quickly overrun by angry white people who felt they were being silenced.
A week later, the complaints began.
For a movement whose most historic moment occurred on steps, it has been willfully missing a step for more than a few generations now. From the Wikipedia entry on the “Missing Stair” phenomena:
A missing stair is a metaphor for a person within a social group who many people know is untrustworthy or otherwise has to be ‘managed’, but who they work around by trying to quietly warn others about rather than deal with openly. The reference is to a dangerous structural fault… that people have become used to and accepting of instead of fixing.
Bruce, after years of engaging in myriad bigoted behaviors that are well-known throughout the disability rights community, has effectively been mostly sidelined. However, the diminishing of his authority doesn’t stem from the xenophobic comments he made in Congresswoman Anna Eshoo’s office last July. It doesn’t stem from calling autistic women colleagues in DC “arrogant.” It doesn’t stem from grooming Black women within the movement to both endure racism and shield him from facing responsibility for being a racist.
No. It stems from him possibly engaging in financial impropriety with a laughably small sum of money.
No one lodged complaints at NCIL or the Center for Disability Resources (CDR), the CIL that Bruce is director of, against Bruce as a result of his bigotry.
The first of *three* complaints lodged against me, written by Shawna’s close friend and fellow SILC director for a neighboring state, Karen, at NCIL in response to my coordination of a listening session arrived in my inbox less than two weeks after the session. Bruce was listed in the complaint as a “concerned leader” in the disability rights movement. The complaint, in addition to being sent to Bruce, was also sent to the NCIL board, NCIL staff, Shawna, former US Senator Tom Harkin, and Dan, director of one of my state’s CILs Shawna accused me of greedily withholding money from.
Shawna did not attend the NCIL Conference so she wasn’t at my listening session. However, that didn’t stop her from replying all to the complaint to express her disappointment about the listening session and threatening to revoke her individual and SILC membership at NCIL (I later learned that neither Shawna nor her SILC had been NCIL members since 2018, so the threat was an empty one).
The NCIL board responded to the complaint and indicated that it was in support of the listening session I’d coordinated on the organization’s behalf.
Karen responded to the NCIL board’s response with an even more direct attack of me, indicating that my body language and flat tone of voice during the listening session were an assault against the white people in the audience.
I replied, reminding Karen that I am autistic and that her judgements of my mannerisms and vocal inflections were, in fact, ableist. I then followed up this communication by filing a complaint with her SILC council, imploring its members to request that Karen cease and desist from using ableist arguments to single me out. Her council, which is chaired by Dan, informed me that they would not be taking action. However, Dan then followed up with NCIL on Karen’s behalf to determine the steps for filing an official complaint against me for coordinating the listening session.
Karen then filed her second complaint against me in response to my listening session. This time, she included language that questioned my competency to hold the position of treasurer, given my autism diagnosis.
NCIL determined that complaint to be unfounded.
Her SILC treasurer, Dana, filed a complaint against me for facilitating the listening session.
NCIL determined that complaint to be unfounded.
Indeed, this ordeal compelled NCIL to determine that racism within the organization — and IL at-large — was a serious issue that needs to be faced, addressed, and dismantled.
And, instead of the multiple complaints against me operating as a “demand to speak to the manager” writ large by people who were committed to using their privilege and position to ensure that I was stripped of my position with NCIL, or much more, the complaints served to show that I was uniquely qualified to lead the newly-formed NCIL Anti-Racism Taskforce.
Thirty years ago, activists crawled up the steps of Capitol Hill to bring attention to the need for inclusion of disabled people within society at-large.
Today, countless Black, Indigenous, and other activists of color are showing our white peers the need to address the missing step, which can no longer be ignored and must be repaired before we can step up together. But how does the repair occur? It starts with listening to BIPOC- ensuring that disability spaces shift from focusing on superficial racial inclusion that simply demands that BIPOC tow the white line in order to be accepted to working to ensuring that such spaces are safe for BIPOC to speak freely.
Additionally, every disability rights organization, including Centers for Independent Living, must prioritize assessing their respective infrastructures to identify where barriers to racial inclusion are present- and then work to remove them.
White leaders in disability spaces must acknowledge the stark disparity that exists in organizations that are led by disabled people as it pertains to racial diversity in decision making roles- and use their privilege to shift the paradigm and build a platform that truly has room for all of us.
Finally, the time to end the unspoken practice of stepping over and around the “missing steps” in our movement is here and we must all commit to experiencing the temporary discomfort that comes with calling out the people who are committed to injecting bigotry, toxicity, triangulation, and other mechanisms that drive systemic oppression into our disability spaces.
The result of our efforts will ensure that our movement becomes the standard bearer for intersectional inclusivity, thus placing it at the forefront of the human rights movement instead of at the periphery.
Reyma McCoy McDeid is a Center for Independent Living director and serves as treasurer for the National Council on Independent Living and chair for the Autistic Self Advocacy Network. She is the recipient of a 2019 AT&T Humanity of Connection award and her 2018 run for office was endorsed by the Working Families Party, the Asian & Latino Coalition, and Iowa Women for Progressive Change. She is also a single mom. Her work has been featured in the New York Times, Vice, Pantsuit Nation, TIME , The Des Moines Register, The Cedar Rapids Gazette, and Progressive Voices of Iowa. Her vocation is mobilizing marginalized persons- the working class, people of color, folks with disabilities, religious minorities, and others- to engage with the political process at every available opportunity.
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