It is so important for Black disabled women to have a village – a group of individuals who understand her fully. A group of uplifters, motivators, and truth sayers who will give you gems of knowledge and love when times go dark. These women will understand your frustrations in ways that many do not and cannot You will never have to “prove” why something hurts because they will automatically know why – they have been through it too. Becoming an advocate has allowed me to build a dynamic village of disabled women, particularly Black disabled women, who hold me down and will empower me when my spirit is running on E.
One of those women is Kerima Cevik, a disabled mother, writer and blogger that resides in Washington, D.C. Kerima was one of the first Black women I found who has written about historical Black disabled people. She has inspired me to do the same, as seen when I feature disabled Black people whose stories are left out of the history books. Kerima’s interview is a powerful read, so much so that my heart was overwhelmed at the truth gems she dropped for this series.
Without further ado, here is Kerima, in all her unapologetic and fierceness being:
VT: Tell us about yourself.
KC: I am my least favorite subject, so I’ll try to be brief. I am a military brat who was fortunate enough to spend a part of my childhood and most of my adult life on military bases overseas and here at home. I am Afro-Latina and Ngöbe-Buglé. I am married to an engineer and have two children, an adult daughter who is an interpreter and special education teacher and a teenaged son who is autistic, nonspeaking, and respected and loved as he is. Our family is multiracial and multicultural.
VT: What is it that you do?
KC: I did community based work for awhile and it while it felt good to help other families, but I realized that permanent changes that might prevent many of the crises autistic people of color and their families were facing needed to happen legislatively. I tried legislative advocacy and realized that yes, change can happen, but it usually happens legislatively after a catastrophic event. In our state that was the death of Ethan Saylor, which happened two years after I attempted to work with a state Delegate to pass a bill that might have prevented Ethan’s death from happening and this still saddens me. My present focuses are pushing for an end to racism and racial disparities in autism services and supports, pushing for transformative change to end catastrophic encounters between disabled people of color and law enforcement, and educating against the erasure of Black disabled people.
VT: Part of your advocacy focuses on the erasure of the Black disabled experience in the disabled community. Why does this matter to you?
KC: This erasure has a direct impact on in the entire Black disabled rights struggle. We cannot be heard in the greater world if our greater disability rights community erases our people from the larger quilt of disability history. Future generations need Black disabled role models. This entire journey began with me trying to find role models who were just like my son. People looked at him and said finding someone like him, Black, nonverbal, autistic, who had accomplished anything worthy of being noted in history, was impossible to the point of being ridiculous. My response was Blind Tom Wiggins, Blind, Autistic, Black, a savant pianist and published composer despite being enslaved his entire life. Our own people are surprised by this when they shouldn’t be. Many Black historical figures are actually Black disabled historical figures. That is critically important now. The idea that both Sojourner Truth and Harriet Tubman became great activists and left lasting historical impact after they were disabled is so important. The reality that both these women and men like Tom Wiggins lives could not be erased at a period in American history when we weren’t even counted as people in this society is monumental. They teach us that greatness rises in every circumstance. Erasing this is actually something I call race-based ableism, or racist-ableism for short. It is behavior that works like a feedback loop into structural racism and structural ableism. We are up against this daily when trying to make our voices heard and it needs to end or we won’t be able to break the last barriers to inclusion held against us as an intersected group. This has become my life’s work to the exclusion of all else except autism advocacy and anti-euthanasia work.
VT: How can the disabled community extinguish its erasure of history and be fully inclusive?
KC: 1) We must achieve full representation in content and context about us. People writing about the condition of Black disabled people by appropriation of our work and pointing at quotes and citations but still leaving us out of the conversation doesn’t equal representation. One day last year, I went on Twitter and saw that I had been tagged on a Storify article about an entire Tweet chat where two white people I’d never met took what I wrote about police training for law enforcement and talked about what I meant by what I wrote! That is representative of where we stand now. Citing Black disabled women and quoting them with attribution is good, but not when it is a way of skirting giving a proper platform to powerful activists who are capable of speaking and writing for themselves.
2) Greater Inclusion in our disabled organizations and community spaces beyond optics is critical. Michelle Obama said something about her daughters being named ‘Time Magazine’s most influential teens.’ She said: “Yeah, I don’t know why.” When asked if she wasn’t a proud mom, her response was “they aren’t influential, they just happen to live here (she pointed to the White house).” Stella Young spoke about her parents reacting the same way when her hometown wanted to give her an achievement award basically for being disabled and not depressed. Right now we are included for optics. I have witnessed people placed in organizational positions and given accolades for simply filling the box of being disabled people of color and that is both an insult to their work as activists and unacceptably tokenizing.
3) Our disability rights community needs to right wrongs. Disability rights history always seems to exclude or severely limit prominent disabled African Americans many have not seen through the lens of their disabled identities. New editions of books already published about our disability rights and histories of disabled groups can have appendices added or be revised and updated to include the histories of intersected populations. These are things I am seeking pathways to make happen. The recognition that such books have the potential to be used as college and high school reference books means that everyone’s history should be told in them. All three points are achievable goals, there is simply no community or organizational willingness to make these changes happen.
VT: What are the obstacles Black disabled women face in society? In our disabled community?
KC: We always lived with the risks of what it means to inhabit the black female body. We are objectified, assaulted, fetishized and hyper/hypo-sexualized, and all these are holdovers from historical Black stereotyping. Additionally we live with everything it means to be disabled. We are infantilized, used for inspiration porn, trivialized, and wrongfully gaslighted into making us believe we are helpless against anyone who might do us harm. We must demand society abide by the ADA and the Olmstead decision with all these assumptions and suppositions about us out there. It seems like an impossible obstacle course.
Yet we come from generations of ancestors like Sojourner Truth who spoke up and stood up for themselves regardless of their circumstances or where society tried to force them to be. That is our hope and the path others paved as Black disabled women. Somewhere I read that most myths have some basis in reality. The myth of the Black superwoman comes from resiliency and strength that stunned those who placed these obstacles in our paths. Poets like Maya Angelou and Sunni Patterson speak about our strength and our resilience without holding back on the reality of being us because it was so critical to how we are able to overcome these obstacles. Everything we do is questioned, judged, and much of the time deemed less than what white disabled folk or even disabled Black men do and that is wrong.
The remainder of my life will be dedicated to trying to teach that part of overcoming structural racism everywhere begins with people understanding the difference between fact-checking Black disabled fem activists and suppressing our voices by automatically questioning the truthfulness of whatever is written or said by us.
Over time, constantly having to defend the validity of what we say on top of fighting for our own voices to be heard exhausts the spirit. I pulled back from community-based activism, legislative advocacy and other projects and decided to limit myself to writing because of that disappointment and straight up battle fatigue. This situation is especially true in the autism community. This is partly because, if it weren’t for their children’s disabilities, some of the parents and grandparents involved in autism activism would never associate with intersected populations and that bigotry erupts on the skin of the autism community like clinical acne. So they are caught in this conundrum of having to stew in their own prejudice and be more inclusive to gain rights for their disabled offspring. Structural racism and micro-aggression toward disabled Black women ends up being the result of this pustular racism just under the surface of the disability right movement in general and the autism rights movement in particular.
VT: How can our community support/uplift Black disabled women? What does that look like for you?
KC: You know how the entire #SayHerName campaign is filled with victims who were Black disabled fems? Everyone is writing about us without our voices? That is what needs to change. Space needs to be given for our personal understanding of what it means to be a survivor, an activist, and a Black disabled woman. Each time I read a new article on violence against disabled people listing black disabled women written by white activists who appropriate the term ‘woke’ to describe themselves and their work, I cringe a bit. Our white disabled peers need to move themselves out of the way and allow as many Black disabled fem voices to be heard about our own history, issues, goals, and challenges as possible. Everyone loves appropriating everything from our hair to our physicality, our culture to our language, but what I would like to see is allies who know better teaching the ones who don’t to truly let us speak for ourselves. Our own racial peers must also include us. Our own men must include us and cease speaking for us. It means a depth chart of representation beyond optics. That means us writing and speaking and them amplifying. That is what I’d like to see.
VT: How did you come into your Black disabled womanness? What struggles have you experienced, and are still conquering?
KC: I had overcome a series of unfortunate events from kidnapping, assaults, and the byproducts of racism by my 17th birthday. I was diagnosed with Crohn’s disease after a serious hemorrhaging event at age 18. Before my 21st birthday, I began to lose my sight. I nearly died, but they were able to save my life and my vision restored itself. There are questions about how that is possible with 6th nerve palsy in both eyes. I still have occasional episodic blindness. I was hospitalized with pneumonia then came an asthma dx [diagnosis] at 22.
My body ages, and as it does it reminds me of all those times someone tried beat the hell out of me. My bones talk to me each morning. We try to come to an understanding about their obligations to me. Sometimes they shriek in protest, sometimes they agree to carry me through my days. I am 55 years old. I was told I wouldn’t live to see 30. So despite the increasing challenges of an aging disabled body, I’m beyond good. I’m fantastic. I live beyond the intent of those who tried to kill me and beyond the machinations of those who tried to belittle, humiliate, and destroy my mental and spiritual health. Existing with love and joy after all that’s happened to me is always humbling. It is why I’ll always be a Deist. I calculated the odds of my surviving any one of those moments when I should have died. Impossible odds happening repeatedly are just not statistically probable. So I believe in the existence of the Divine. I am not remarkable. I am just one female member of our Black disabled women’s community.
VT: What does it mean to be a Black disabled woman in America?
KC: Being who we are means throwing off everyone’s forceful definitions of who we are, and everyone’s determination to define what our mental and emotional health, values, and goals should be in life. That is what it means to be a Black disabled woman. We fight for rights that are constantly denied us. We have always fought alongside our non African American disabled peers as well. The difference is we are telling them it is time they fought as hard for us as we do for them.
I want justice for us. I want crimes against us to be pursued and adjudicated fairly. I want equal pay and work for disabled Black women. I want respect for us.
We are the women who historically rise and shoulder the burden of voicing dissent against injustice at great cost and no expectation of reward. We don’t rise like leavened bread or a soufflé that falls when bullies shout and stamp their feet. We rise like mountains bursting upward from oceans. We don’t do this because we are not afraid. We do this knowing our bodies and our works and our words are opening up new opportunities for future Black disabled women to move forward and do great things. Our minds are paving the highways and byways of that brave new world.
That is what being unapologetically Black, disabled, female means right now in America.
VT: If you could tell your younger self anything, what would it be?
KC: I know you don’t believe it now, but you are going to survive this, and life will eventually be more wonderful than you can ever imagine. Be your own best friend. I love you.
VT: For the Black disabled women who may read this, what words of wisdom/love would you want to share?
KC: You are important, valued, respected, loved. Care for your hearts, minds, and souls as you would a cherished child. Whatever happens these things are your personhood, and none can strip you of them without your consent. Everything can be overcome. Believe me. We know this as Black disabled women because we already have overcome so much. Never give up. Rise. We are always with you. Solidarity.
VT: What’s a little known fact about you?
KC: Most people don’t know that English is not my first language. I am a heritage Spanish speaker. My heritage is Afro-Latino, Italian and Ngöbe-Buglé. I sing, though years of asthma and pneumonia have harmed my vocal chords. My husband still likes my voice, and when the moments present themselves he plays his guitar and I sing and our son wanders in and out of the music.
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From what you have read, it is undeniable how powerful of a voice and force Kerima is. Her words energized me in the way we both view the obstacles that impede the opportunities and quality of life of Black disabled women in this country, and within the disabled community specifically. To learn more about Kerima, you can find her on the following spaces: Twitter: @kerima_cevik; and the blogsphere, The Autism Wars (http://theautismwars.blogspot.com), discussing intersectionality on Intersected (http://intersecteddisability.blogspot.com), and addressing race and social justice on the Brave blog (http://overcominghate.blogspot.com).
Our last feature for this series will be a writer and advocate who is not afraid to speak her mind and stand firm in what she believes. I have seen her grow to become a dynamic voice in this community, and am eager to share with you her words and her experience next week. Stay tuned.