Living with multiple disabilities has given us the opportunity to advocate for ourselves and others.
Trigger Warning: Discussion of harassment and negativity towards invisible disabilities.
As an advocate, it is our responsibility to speak with state legislators about the autism community and autism-related legislative bills. This includes presenting information and interacting with the community to promote autism awareness. For mental health and autism, self-advocacy has become a positive side effect of adversity.
Persuasion is an intricate part of our advocacy position. In our community, there is a lack of understanding of invisible and visible disabilities alike. Bias, stereotypes, and ignorance towards the disability are commonplace.
On one occasion, we experienced harassment on public transportation.
The public transit system has a special fare for persons with disabilities. To use this discount, you obtain a card from your local Independent Living Center that is partnered with the city. As a bus rider, we would have our card in hand to show proof that we qualify for the reduced fare. Also, we have the ADA approval for a Personal Care Assistant (PCA) while riding. Normally, our husband is our acting PCA since he is our primary caregiver.
We were at the bus terminal waiting for our bus home, and we had our proof of eligibility in our hands. We step onto the bus, show our card, and present our husband as PCA. The bus driver proceeded to physically place his hand in front of us. He stopped us and demanded more proof of reduced fare eligibility and PCA approval. He stated, “You do not look like you have a disability, so show me more proof.” At this moment, we took out our Medicare card as “extra” proof. He let us board after thoroughly looking over the cards we gave him. This is an example of the harassment we have experienced multiple times while riding public transit.
As the people being targeted by the harassment, it was our responsibility to attempt to educate the transit employees on disability etiquette. The goal was to persuade the city transit employees to avoid discriminating against persons with disabilities based on physical appearance.
Addressing this issue had four parts: speaking to the terminal supervisor, writing a letter to the city’s ADA Coordinator, speaking with the Director of Public Transit, and presenting information to the entire transit system on the autism & disability community.
Speaking with the terminal supervisor, we explained the situation and the people involved. They were apologetic, but defensive. Even though we had prepared mentally for the conversation, we were not prepared with disability facts for the supervisor. After the conversation, we attended a Transit Professional Advisory Committee (TPAC) meeting that was open to the community. The meeting yielded information on the process of ADA ridership.
After which, we conducted research to verify the facts to include in our letter.
Drafting the letter was essential in the persuasive process. The letter consisted of our personal experience and the facts on how our rights were violated. Looking back, we should have changed the tone of our letter to fit the audience. Our letter was harsher than intended, even though the information was valid. Tailoring a letter to be palpable for the audience is vital. The letter was received by the ADA coordinator and passed to the Director of Public Transit. We received an email in response to our concerns and an invitation to speak with the Director via phone.
In preparation for the phone call, we drafted notes on key points to discuss. It was a pleasant experience and the call lasted for an hour. Each party shared their point of view, including information on how public transit operates for persons with disabilities. It was a successful conversation that yielded great results!
Overall, we were successful in making progress in self-advocacy and building awareness for public officials about the disability community.
Throughout this experience, it opened our eyes to what works and what doesn’t work to communicate your needs as a person with disabilities. Often, people will judge you based on your appearance. If you do not visually present as having a disability, discrimination will occur.
During this process, we succeeded in presenting the facts, changed our approach to the audience, learned from our mistakes, and hopefully made a lasting impact on the public transit employees.