This week Simone Biles made the choice to care for herself while many would have preferred she did not. Her decision has given us the opportunity to see what it means to be true to one’s self in light of (sometimes unreasonable) expectations by others. Biles’ courage to live her truth and my reflections on Disability Pride Month are purely coincidental. The piece is a brief glimpse into some of the experiences that shape my truth as a person with a disability (PWD). I hope you find it a refreshing read. Your comments are always welcome.
In this post:
Story: Disability Pride Month
Early in July I saw a reference to “Disability Pride Month.” It took me a second to make the connection between Disability Pride and the 31st anniversary of the signing of the Americans with Disabilities Act (ADA) on July 26, 1990. I had never heard of disability pride Month referenced before, but it seemed logical after celebrating LGBTQ pride in June. The reference drew me to consider what disability pride might look like.
The ADA is an “equal opportunity’ law for persons with disabilities (PWD). It is modeled on the Civil Rights Act of 1964. The ADA serves as a reminder that we are all whole persons with many things that make us unique while sharing a common set of rights to participate in public life.
In 1984, after being diagnosed with a degenerative eye disease (retinitis pigmentosa), I enrolled at the Milwaukee Area Technical College (MATC). I had already earned a degree in finance from the University of Wisconsin-Milwaukee but needed to develop skills I could use after losing my vision. I was asked to represent students with disabilities on the MATC Student Senate. I soon found myself representing a group of individuals who found the college inaccessible due to a lack of services and usable facilities. Among the barriers: no place where a person and their personal attendant could use the toilet, no infrastructure to support special needs in the (occasional) absence of personal attendant services, questions of insurance liability for the college and volunteer assistants, etc. I quickly learned of the many ways physical and organizational infrastructure are barriers to access for persons with disabilities. One by one the barriers fell, but only after many meetings with many Deans, Directors, Facilities Managers, Student Association leaders, and the students themselves. The experience was a great way for me to learn about the way barriers to access are often just a tall stack of questions that have never been answered. I suspect the work we did simplified the college’s ability to meet the future standards of the Americans with Disabilities Act of 1990.
As a researcher, my interests focus on how persons with disabilities engage in professional settings. This work has exposed me to topics such as: models of disability, disability archetypes, microaggressions, disability shame, etc. Even in the most inclusive organizations PWD are regularly required to negotiate environments for which they were an after-thought. This negotiation can be exhausting. We are often challenged with the question, “Is this the mountain I want to die on?” Among the questions/situations faced by PWD on a regular basis:
- Being asked, “What’s wrong with you?”
- Finding that an event/activity is in a place that cannot be readily accessed
- Being asked to discuss and make decisions based on documents that contain no accessible content
- Living in fear that circumstances will require that a previously hidden disability will need to be disclosed
What is Disability Pride?
At the funeral of our cousin Stuart, I overheard someone speculating that Stuart was in heaven and no longer affected by Downs Syndrome. The Stuart we loved had Downs Syndrome. That was a part of what made him Stuart. We found no comfort in the thought that the Stuart we loved would spend eternity living as someone else. I don’t think of disability pride as people celebrating the fact that they are seen as having a disabling condition. For me, the statement, “We are all whole persons” describes disability pride.
Some statements of disability pride:
- I am a member of the public, rather than a member of a fringe group
- The way I engage with the world (through touch, sound ) is as valid as those who use light to process their surroundings
- If a place is described as “open to the public” I expect it is open to persons with disabilities
Several years ago, the controls at a busy intersection near my house were changed to respond to traffic levels rather than pedestrian right of way. I had no reason to expect the on-coming traffic flow would receive multiple left turn arrows within a single traffic cycle. As I crossed the street: a car ran over my cane, ripping it from my hand. I had the presence of mind to know that crawling on the ground to retrieve my cane would likely make me invisible to the traffic and take me out of the pedestrian crosswalk. Instead, I threw my hands in the air and screamed, “Help” as loud as I could. A woman who had seen the crisis unfolding got out of her car and rescued me. The situation could have easily been anticipated by the designers of the traffic controls. It either wasn’t or wasn’t taken seriously. Once I was safely out of the roadway, I was able to thank the person who rescued me. She may very likely have saved my life and I told her so. In fact, I was thanking my rescuer for accepting responsibility for a poorly designed traffic control system and for a driver who, apparently, knew nothing about either pedestrian right-of-way or white cane laws.
I don’t see disability pride as a substitute for gratitude. I regularly receive assistance and support from individuals who make my life easier and, sometimes, help me out of potentially dangerous situations. I have made it a habit of carrying good chocolates in my travel bag to share with the kind souls who appear out of nowhere on a regular basis.
A simple disability pride quiz: (Answers below)
- What do you call a building that cannot be entered?
- What do you call a document/screen that has no accessible content?
- What do you call someone who refuses to consider first person experiences as evidence of a problem?
- What do you call someone who is being paid to make things better but makes things harder to use?
- What do you call someone who doesn’t let you finish your thought before interrupting?
- A fool
LGBT pride is a way of saying “I’m here, I’m queer, so there.” Disability pride has a similar, and yet different, flavor. Like LGBT pride, you should know I’m here, I don’t see, and that is just a part of who I am. Civil rights are human rights. Open to the public includes people who are like me and people who are not like me. Liberty and justice for all includes the people who are like me and all the people who are not like me.
The United States Justice Department provides a wide variety of standards and guidelines for supporting the opportunities of PWD. Being familiar with the ADA Home page is a great way to become familiar with those guidelines and standards.
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For more information:
Mainstreaming on Main Street
Supporting organizational environments inclusive of persons with disabilities in professional/skilled settings
Copyright 2021, Dan Lococo, All rights reserved