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Black History Month 2017: Johnnie Lacy, Defiantly Black & Disabled

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Image of Johnnie shown smiling directly into the camera. She is sitting in her wheelchair wearing a buttoned shirt, with an office desk to her left.

Image of Johnnie shown smiling directly into the camera. She is sitting in her wheelchair wearing a buttoned shirt, with an office desk to her left.

In continuing with my Black History Month focus on Black disabled leaders, I am proudly sharing the story of Johnnie Lacy, a woman who directed the Community Resources for Independent Living (CRIL) in Hayward, California for over a decade.  The photograph of Johnnie is from the collection of Kenneth Stein, an advocate with a passion for history and highlighting those forgotten trailblazers that rivals my own.

Johnnie Lacy:  Defiantly Black & Disabled

I titled this piece as so because that is how I read Johnnie’s story – defiantly herself and demanding that her existence and aspirations be respected.  It made me think back to when I wrote that being a Black disabled woman was an act of defiance, in relation to Korryn Gaines.  Johnnie’s recounting of her life story showed my sentiments to be true – we are placed in the position to push against obstacles that others do not bear.  

Fortunately, Johnnie had the opportunity to enlighten us about her upbringing, becoming disabled at 19 years old, and battling blatant ableism and discrimination in her own words.  The Bancroft Library at Berkeley has two amazing resources where we can both hear and read Johnnie’s testimony:  a transcription of the oral history she gave, and a video clip of her discussing minority versus disability identity.  Both of these invaluable resources affords us to gauge the dedicated and strong-mindedness nature of Johnnie as she navigated a world where her identities as both a Black person and a disabled person had limited legal protections.  

Johnnie’s Beginnings:  From the Deep South to California

Johnnie’s understanding about race was shaped by her upbringing in the Deep South during the late 1930s and 1940s.  It was in Louisiana where the stark differences between Blacks and Whites were seen, especially in the school system.  Johnnie recounted how the education system worked:  the Black schools got the “hand-me-down” books from the white schools, which meant that they were behind academically.  I had heard Black women I knew who lived during that time discuss having second-hand books, so it was interesting to see Johnnie retell her experience as a young girl in the South.  

Johnnie and her family moved from the South to McCloud, California in 1947, where she confronted racism on the West Coast.  It was in California that Johnnie went to her first integrated school, and noted how the differences between the races unfolded:  

But there was another kind of intervening situation that came up–also was that during the time when blacks were being recruited from the South, white managers were also being recruited from the South, and their lifestyle was the style of segregation, and the black lifestyle was also a style of segregation. So basically, segregation was transplanted from Louisiana and Texas with the workers and the managers who came to McCloud. And this is something I learned much, much later on.

Becoming Disabled at 19

It was while Johnnie was working on her nursing practical at San Francisco General Hospital in 1956 that she diagnosed with polio at the age of 19.  Her first symptoms were severe headaches, and then blurred vision.  It was the combination of both symptoms that made her assume that she needed glasses.  It was after being urged by the local physician to get care that she realized things were more serious than she imagined.  

Johnnie described being tested and learning she had polio:

I was in denial. I still thought that it was my eyes and that I had a headache because my eyes needed examining, so when I was finally seen by a doctor to do the spinal tap–which they said it didn’t hurt, but it was really painful [chuckling]–and they sent the spinal fluid to the lab, this is when I found out that I really did have polio. My recollection was that they wanted me to stay in isolation overnight or for a few days so that they could observe me, so I was put in isolation.

Even though I was weak, I’d say for two or three days I would get up and go to the bathroom and everything, until the last day that I walked. I can remember getting out of bed, going in the bathroom, very painfully and all that. Came back to get in the bed, and I couldn’t quite make it. And I was struggling to get in the bed, and someone peeped through the window and saw me, and said, “You’re not supposed to get up. Don’t get out of bed again.” And so I gradually became totally paralyzed.

Initially, I was not able to do anything, not even breathe.

Yes. I was placed in an iron lung. Also, that was when I also learned that I experienced–was a near-death experience, which I was not aware of in terms of the connotation of near-death experience. What I can remember–things that happened that–in the middle of the night–that were very urgent, like my family was there. I went through this experience of drifting toward the light and almost reaching the light, with the tunnel, and being brought back.

Johnnie was in the iron lung for two weeks, then went to a chest respirator, and finally rehabbed for 2-3 years.  Because of the polio, she was paralyzed, and endured many rehab treatments where she began to reach minimal strength.  It was at Fairmount Hospital, where she met Ed Roberts and Bill Tainter, both men had polio.  These men would become prominent leaders in the independent living movement as like Johnnie.  

Disability-Based Discrimination at San Francisco State University

In 1958, Johnnie decided to go back to school and attend San Francisco State University.  It was here where she experienced blatant ableism and discrimination because she was disabled.  Let me remind you that at this time, Johnnie’s disability identity did not have legal protections.  There were no mandates in place to declare that she had a right to attend college and receive accommodations.  

Johnnie recalled one of many incidences where she was discriminated against by college administrators:  

When I approached–I did very well in all my special ed classes, and the director of special ed–I had taken a class from him and had done well in that class, and he knew that I wanted to major in speech therapy, and he started a campaign to discourage me.

Because he said that the conditions for people in wheelchairs were not good, that a disabled person with my severe disability would not be able to drive–which I hadn’t learned to drive at that time–they would be expected to go to the dark corners of schools and buildings that had stairs, there would be no accommodation, and he couldn’t see any way in which I would be able to successfully become a speech therapist.  

When I insisted, in order to convince me, he called together an urban panel of experts in the special education field–and they were a blue-ribbon panel– Supposedly to examine my potential as a possible speech therapist. What it turned out to be was a panel who was not examining with me what my potential was but to discourage me from applying to the school. After I met with this panel, they all agreed that I could not do this. I insisted that I could. And the head of the department by this time said, “If you apply, I will not accept you. And the only other alternative you have is that you can take graduate courses on your own and work on your own, but you will not become a part of the department.”

And my final and departing shot to him was that if I were just a woman, he could not do this to me; if I were only a person of color, he would not be able to do this to me; and my conclusion was that the only reason that–the only way that you would be able to take this unfair advantage is because I have a disability. And he got really upset and walked away. But that was my final shot with him.

To read about administrators making it their duty to prevent Johnnie from becoming a speech therapist because of their prejudice towards disabled people is an example of gross abuse of power.  It made me realize why the ADA (Americans with Disabilities Act) and Section 504 of the Rehabilitation Act matters so much, and how fortunate I am to have attended college with these policies in place.  Despite all of this, Johnnie did graduate in 1960, though she was prevented from participating in the ceremony.  I will be quite honest and state how angry I was for Johnnie, and how unfair it was to read of her being mistreated when all she wanted to do was earn a degree.  

Does One Have to Choose Between Blackness & Disability?

In addition to learning about her college experiences, I also was fascinated to discover how she viewed her Blackness with her disabled identity.  

But I basically was forming my own personal philosophy and political philosophy, and I never really felt completely a part of a movement, African-American movement, mainly because I was very much aware that I was not particularly acknowledged as an African-American with a disability who had ideas, who could contribute, and all of those things. That also was kind of a later development for me.

It has been problematic for blacks to identify with disability. My classmates would have had to accept my disability within the same intellectual framework as my blackness–that of an oppressed minority opposite.  

I believe that African Americans see disability in the same way that everybody else sees it–worthless, mindless–without realizing that this is the same attitude held by others toward African Americans. This belief in effect cancels out the black identity they share with a disabled black person, both socially and culturally, because the disability experience is not viewed in the same context as if one were only black, and not disabled. Because of this myopic view, I as a black disabled person could not share in the intellectual dialogue viewed as exclusive to black folk. In other words, I could be one or the other but not both.

I believe Johnnie’s assessments concerning how Black people view disability, and thus how Black disabled people view themselves, are accurate.  Her statements illustrates why, in many ways, Black people who are disabled have difficulties owning the label; and then becoming politically disabled, embracing disability culture, and developing disability pride.  

Reading her reflections made me remember why I proclaim I am Black first – I refuse to allow my Blackness to be erased, even by fellow members of the Black community.  When I look in the mirror, I see a Black person, a Black woman.  My Blackness matters just as that of non-disabled Black people, and I will not be ignored or dismissed because I am disabled.  Though Johnnie did not feel that she could identify with both identities at that time in her life, that did not mean she did not take notice of the changes that were occurring for Black Americans.  She was heavily involved in attending the debates and events held by Black leaders like Malcolm X and Martin Luther King, Jr.  In her own way, she still owned her Blackness, even when it may not have been recognized fully by others.  

In reading the rest of the Johnnie’s story, she reminded me of the women I knew from her time – headstrong about what was right, and determined to get what they knew was theirs to have.  Johnnie faced more obstacles than I can fathom, yet she did not allow the ignorance of others to turn her bitter or be despaired as some wanted her to be.  That is why I view Johnnie as defiant – she refused to told “her place” or her limits as a Black disabled person.  There is a little bit of Johnnie in me, and I recognize Johnnie in a lot of the Black disabled women I know.  At times, we all need to be Johnnie when “-isms” and oppressions tries to block us because we are disabled.  

Final Thoughts

Johnnie shared her story in such a way that provided a clear view of the transgressions she endured as a Black disabled woman during a time where both communities were fighting for equality and justice.  However, in learning about Johnnie’s involvement, I was shocked to uncover that her place in disability rights movement has been omitted by the very CRIL she was the first long-serving Executive Director for.  On the CRIL-Hayward website page listing its history, Johnnie’s name is nowhere to be found or how her leadership grew the organization to be sustainable in the community.  

The only way one can find Johnnie on the website is by inputting her name in the “search” bar, and the only result that comes up is a write-up about her passing.  It is there that we learn the following about Johnnie’s instrumental role in the CRIL’s establishment:

…led CRIL in its early days from 1981 to 1994, establishing the center as the premier disability mentoring and peer service center for people with disabilities living in southern Alameda County.  After helping found CIL– Berkeley, Johnnie was encouraged to take over the helm at the newly created CRIL, working tirelessly to develop CRIL’s visibility and presence in Hayward.  Johnnie obtained CDBG funding from the City of Hayward, among other significant donations, to build CRIL’s office on A Street – a project that was completed in 1984.  CRIL remains one of very few ILCs in California to own it’s office.

What angers me is not just the blatant erasure, but that this is a common occurrence in our community when it comes to the participation and passion Black disabled people, particularly Black disabled women, bestow to improve the livelihood of all of us.  CRIL-Hayward’s recollection about its history is incomplete when it fails to mention Johnnie, especially since the African-American population of Hayward is double that for the entire state of California (11.9% and 5.8% respectively).  

Statistically speaking, we could assume that CRIL-Hayward is likely serving a higher number of African Americans in its community than other CILs in the state.  How many of its African American clients and advocates would benefit from knowing Johnnie’s legacy, and being empowered by it by visiting its website?  How many more could aspire to continue the work Johnnie was committed to while at CRIL?  When we exclude the work and involvement of people in our community, we allow our members to not have their own heroes and sheroes to look up to.  

While drafting this article, I was reminded as to why I am doing this series and writing these stories – no one will give us our credit BUT US.  Johnnie Lacy matters to our movement, and her place in history needs to be well-known to all of us.  The more I learn of Black women in our movement, my sense of pride, gumption, and determination grows exponentially.  As I shared in my post about Joyce Jackson, these are my sheroes whose challenges and successes I can fall back on when I need to keep fighting.  Writing these articles is my way of paying respect to them, and to allow my fellow Black women advocates know that we were and still are deep in this movement, even if our names are not written.  

(Featured headlining image:  Courtesy of Kenneth Stein.)

Please Note:  Ken has been very kind to share his collection with me for this series.  These photos may be shared on Facebook, but may not be reprinted, put on any website, or used for any other purpose without expressed permission.  I ask that you respect his creativity and seek out his permission first and give credit for any other uses.  Respecting the art & creativity of others is a priority for me, & I ask that you do the same when it comes to the body of work shared by fellow advocates.  Thank you. ~ Vilissa

About Vilissa Thompson, LMSW

Vilissa is the Founder & CEO of Ramp Your Voice!, an organization she created to establish herself as a Disability Rights Consultant & Advocate. Ramp Your Voice! is a prime example of how macro-minded Vilissa truly is, and her determination to leave a giant "tire track mark" on the world.

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