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I shed many tears to unpack these memories of my wounds that  are clearly still open just to write this blog. 

The subject of ableism is relevant to all aspects of life yet there is very little discussion.  The subject is basically unchallenged by society. 

While many people are recognizing and studying racism, much less is being done in terms of the everyday ableism that those of us with disabilities are living with.

Growing up in an ableist family

When I was seven or eight years old, I remember crying every day on the bus to school,  trying to comfort myself by singing “What the World Needs Now Is Love.”  Looking back, I can say that was my earliest depressive period, but at the time, I just didn’t know what was happening.

I finally got the courage to tell my mom about these episodes, and her response was to tell me that it all will end soon. We never talked about the subject again.  I’m still waiting.

Cut to being ten, my father angrily half carrying and half dragging me across a street in Boston.  I was having a seizure and couldn’t walk. 

These are my first personal memories of ableism as a Black queer female.

Ableism is another form of oppression. It’s very prominent. 

My parents were more concerned about projecting an image of the “perfect” family than they were about my very real needs.

Society is designed physically and emotionally for able-bodied people yet most people will use the services fought for and used by disabled individuals. 

Black ableism is very much linked to our survival. It’s noted as far back as Africa, then again with slavery.

Even about 15 years ago, my mom was discussing her job search with some family members, and at one point in her response, she stated loud enough for me to hear, “It’s not a job if it doesn’t include benefits.”

I sometimes teach yoga (which she calls yogurt) and do other work.  

She made it clear that what I do is meaningless. 

After three decades of working many different jobs, many employers expected more than I could give because my disability was invisible. Being let go over and over again was very painful. 

After five years with one employer, I had to take several months of sick leave. I expressed to my mom that I did not wish to return there for health reasons. She simply said, without even looking at me, “Why don’t you apply for SSDI?”

She said nothing more about the subject since. I suspect that she felt like I failed, therefore she failed. There are so many false internalized beliefs that must be untangled before Black ableism can be healed.

I recently watched Crip Camp, which gave me another powerful touch point.  Camp Jened existed from 1951 to 1977 and it provided young disabled teens with space to explore themselves while there, anything from swimming to playing musical instruments to making out with each other—they got to be normal teens. 

It was so mind blowing for many of them, they returned year after year.

Many of them grew up being active members of the disabled civil rights movement that was exploding: Disabled in Action.

They protested and had a 28-day sit-in in government officials’ offices to get Section 504 of the Rehabilitation Act signed.  

Many went on to get their graduate degrees, work and contribute as part of society, and some are married.

This provided so much more than a chance for kids to play; it also helped shape their futures and so many others.

Recognizing that I’m not the problem

Lack of inclusion for disabled family members seems common in  Black families, and probably derives from fear and lack of education.

Low-income people are striving just to get by day to day, and disability awareness is the furthest thing from their mind.

Yet my family is no longer low income, but the mindset is already ingrained and passed down.

I spoke with a woman with disabilities that was taught to be proud of herself in all respects. Her mother had disabilities and was an advocate for many others as well as herself and her daughter. 

The woman is, not surprisingly, an activist and an interpreter for the deaf. She realizes her experience growing up was not the norm but is hopeful that one day it will be.   

Just like Camp Jened gave opportunities for teens with disabilities to exist as humans in social settings, I’ve learned that I can be proud of who I am. 

People with disabilities don’t necessarily need a cure—we need access to the world.  

Many disabled people, especially the young, feel very optimistic that change is on its way and they are willing to do much of the work. 

Realizing that I’m not to blame, that my disabilities simply are, rather than being some failure on my part, has set me free.

I am proud of them.

I can’t help but wonder what happened to the few Blacks that attended this camp or were part of the disability movement. It frustrated me that their stories were left in the background.

A few years ago, all the women from my immediate family were talking on Christmas morning and I  commented how early it was (it was before 8 a.m.). 

My niece laughed. My mom said that normal adults are awake by 7 a.m. 

She’s up at 6 a.m. 

This is another example of casual ableism in my family. 

I have consciously obtained a family of choice as an adult, and I now recognize that my mom is driven by fear, especially when it comes to issues of health. 

She might have seen a disabled Black person hanging from a tree when she was young.

She definitely doesn’t want to acknowledge that her daughter is disabled.

America prides itself in the delusion that systemic bias does not exist, but in today’s world, many obstacles are in place for disabled Black people, such as education, living environments, mental and physical health care, career options, and so much more.  

State policies have discouraged and impaired many marginalized people, including disabled and Black individual,s from accumulating wealth and/or skills.  

I hate the systemic bias that exists. It’s the pink elephant in the middle of the metaphoric room.  

Because of this caste system and its invisible bonds to all of humanity, I did not receive the support needed in different stages in my life. 

This is the same for many people who are neurodiverse or have other disabilities.

Taking steps to protect the next generation

My nephew is autistic and a young Black artist.  As a Black disabled person, I am concerned about his future.   

My nephew does not have much of an identity. My family is embarrassed by his neurodiversity. They don’t believe his life can amount to much. 

It hurts for me to be around them. I received similar treatment. I, too, was not included in conversations or  family decisions. 

There is government-funded assistance for low-functioning autistic adults (SSI, using requiring an RFC) where the disabled person receives a monetary allowance, housing assistance, and other benefits.  

There  is a lot of paperwork and it may include seeing government-appointed doctors that can be demeaning and dismissive. It’s a project and a half.  

This needs to be completed before the government-funded allowance can be applied to my nephew.  

My family has chosen not to recognize how broken the system is.

My mother and sister both believe that once they throw money at the situation, all will be settled. 

They have chosen not to acknowledge that I understand this system and have a sense of the work involved

My sister is a lawyer and knows a lot from the judicial end, but I can share experience from my personal perspective. 

My family chooses not to listen to me.

I recently read that in the ’60s the Black civil rights movement and the disability movement seldom intersected.   

The Black community will not advance if the disabled individuals within it are not accepted and embraced.

I’m not sure what the answers are, but a discussion of  Black ableism is probably a good start for the healing to begin.

How you can love and protect yourself

  • Gain allies

I recently went to a Black Lives Matter march and the walk was long. One of the marshals was encouraging my friend and me to move faster. I was breathless and could hardly speak. My friend let the marshal know that I have lung disabilities and I’m doing the best I can.  As the marshal continued to urge us along, my friend stated using a bold, commanding voice, “Please leave.” Which he did with a look of confusion on his face.

  • Accept yourself

A few weeks later, I participated in the Queer Liberation March. The sun was overhead and strong. It was a very hot day.  There were many lively outfits, innumerable signs, and smiles. I felt proud to be a part of it all. My friend kept asking if I was okay, and concurrently a wheelchair kept bumping into me.  After 30 minutes of these activities, I finally really looked at the wheelchair and realized no one was in it. This was a service set up by the organizers of the march, so I sat down (originally for 15  minutes or so), but as I relaxed and let my shame dissipate, I realized I needed the help.

  • Stay informed

I recently learned the battery charger on wheelchairs can be used to charge cellphones. While this is not super relevant to me right now, it’s good to know that actions are being taken to help wheelchair users. I listened when the woman in the wheelchair spoke about her experience of ableism. For this, I’m grateful, and the more I learn the more empowered I become, and the less lonely I feel.

  • Become an anti-ableist supporter

I had a great talk with Alison, who also deals with chronic illnesses. She helped clarify times when ableism was a factor in my life.  

Before this discussion, I did not completely understand what it meant and how it has impacted me.

I was happy and honored to inform others of the way this structure oppresses, and I hope it inspires others to continue the conversation. 

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  1. The line ‘People with disabilities don’t necessarily need a cure, we need access to the world.’ really jumped out at me. I am aware that as a young white women I have so much advantage when it comes to medical care, and to the world more broadly. I can’t imagine having to negotiate healthcare with the systemic bias that it holds.

    1. I know – we struggle, but Kay has shared experiences with me that I just can’t fully imagine! This is why I’ve felt it’s so important to put her voice out here as well. As a white person, I *don’t* know the experience, so I decided to lift up her voice to help us all better understand.

  2. Thank you for being so open, honest, and vulnerable with your post. It takes courage to share. I appreciate you taking the time to share with us.

    1. I’m grateful Kay’s been open to doing this too! I’m trying to gather up more diverse experiences in my posts because I recognize the importance of that diversity!

  3. Because my mum had endometriosis, and severe period pain, she supported me and my quest to figuring out my health issues plus I’ve been brought up in a home where everyone is free to express their views and discuss it. I have always realised what a privilege these two things are and more so when I read this. It honestly just scares me to think if my life was otherwise. This is a fight none of us should have to go through. Thank you for sharing Kay’s story.

    1. Kay and I got pretty deep into this topic because she is still recognizing some of what she experienced as ableism. I feel really privileged that when my depression started(when I was maybe a year or so older than Kay) that my mother was willing to recognize it and get me the help I needed. None of this is easy – but family can make it easier or harder. We did a lot of digging to find the few sources we had – for the most part ableism simply isn’t mentioned in discussion within the black community – which makes things even harder!

    1. It can be. There’s so much wrong here. I’m just hoping that we can use this information to help reform our system.
      Kay’s experiences were painful, and are so important to learn from – I just hope stories like hers will help folks better understand how pervasive ableism is and how deep an issue it can be.

  4. This gave me a lot of insight. I am Autistic and chronically ill. I am an Autistic Disability Rights Activist. I grew up with sense of feeling like a burden.

    I am white and have been reading a lot on how to make my work intersectional. Now the biggest ableists I face are other white people But I have experienced ableism from Black people and seen other incidences of ableism from Black to white most famous is Trevor Noah making fun of a service horse user as part of his show.

    While generally I trust Black Disabled people to hold abled Black people accountable, I wonder if it is okay and how to hold Black people accountable when I personally experience ableism or other scenarios.

    1. Whitney,
      So many of us(no matter what our race) feel like a burden at some point!

      I would say it’s important to speak up for yourself when you experience ableism or discrimination no matter who the source is. It’s really about picking your fights.

      I do think it’s important to protect yourself, so the judgement about what to say and when really revolves around its impact on you and your ability to handle the potential ramifications.

      I’m so glad you found this post insightful!

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