Patti Hays

From the CEO: March 2017

I was surprised to read recently that Harriet Tubman, American abolitionist and suffragette, had a disability. As a result of a severe head wound early in her life, she suffered from seizures and other neurologic ailments. So significant was her injury that she was deemed as “less valuable” and could not be sold because her work capacity was below the standard. Was Harriet an early self-advocate when she fled slavery while her “owners” were contemplating her fate and that of her family? First as an abolitionist, then as a suffragette, Mrs. Tubman worked for equity with her life opportunities.

Self-advocacy and equity have been in the headlines the last few months with more than a few stories of protests, crowds, and people’s opposing perspectives on a variety of polarizing topics. One that personally resonated for me was the January 21 March in DC. This group captured my attention when it was just a rumbling. As this expression of freedom took shape and came closer to reality, I was energized to see that among the Unity Principles was the mention of disability issues. With input from some active voices, the inclusion of disability rights in the principles was better refined. The issues of discrimination, sexual assault, pay inequality, and vulnerability to violence are all magnified for women, as well as men, with a disability.

Today more than ever, the voices from the disability world are being heard. The forecast was that 45,000 people with disabilities would join the march. If this happened, it would easily over shadow the crowd of 8500 who participated in the march following the passage of the ADA in 1991. There were many people who did not travel to DC, still they participated. A virtual march was created to allow protesters with disabilities, unable to march, to participate through an online movement. Many marched in their hometowns and nearby cities. But, I went to DC. I could represent those who couldn’t be there. I could represent those who couldn’t march. I don’t know what the final count was for those with disabilities who did march. I suspect the total number of people diminished their visibility. The crowd was overwhelming and the organized route changed to an avalanche of pink hats and signs flowing through the city.

I don’t recall the topic of disability being such a visible part of any election prior to 2016. We saw Anastasia Somoza, a disability rights advocate given a visible role in one convention. We also saw the repercussions when a reporter with a disability was imitated. If you are reading this newsletter, I am going to assume that you care, in some fashion, about being part of an inclusive community, which includes those with varied abilities. For you it might be personal. It might be a part of your business. It might be that you are just a concerned, welcoming citizen becoming aware of the issues. It might be something else…but regardless, you care.

In light that the Women’s March in January included many varied topics of which disability was just one, it might not have been the forum in which you chose to participate and express yourself. That’s okay because in our society we all are free to express ourselves as we see fit.  There will be opportunities for all of us to continue to be activists in the disability world and also support those with a disability to self-advocate. As the disability community digests these various social challenges, as well as the opportunities, there are some pertinent issues to contemplate and questions to ask:

  • Will we see continued government understanding and support of IDEA (Individuals with Disabilities Education Act)?
  • Will the state of Indiana support funding in the 2017 budget for Direct Support Professional (DSP) increased compensation?
  • What will be the outcome of the upcoming Supreme court decision regarding how schools support children with disabilities? (Endrew F. v. Douglas County School District)
  • How do we guarantee insurance coverage for those with pre-existing conditions if the Affordable Care Act is repealed?
  • How do we ensure that everyone, including those with a disability, is treated with dignity and respect, while also given equal opportunity?
  • Is this community as accessible and inclusive as it could be?

How can you be an activist?

  1. Get to know your local representatives. Local, state and federal all need to be educated on the issues related to disabilities
  2. Write letters. Email is easy, but letters are more meaningful. Phone calls work, too. While social media may feel like you did something, letters and calls are better. Tell your story and be specific about what action you want from them. For example, describe how the Affordable Care Act has helped your family.
  3. Join a group…even if it is just on their mailing lists. They can help you be a part of movements and keep you informed of changes. If you have the resources, send monetary donations of support. Just a few of the national disability advocacy organizations:
    1. Arc
    2. TASH
    3. The American Civil Liberties Union (ACLU)
    4. Autism Speaks
    5. United Cerebral Palsy (UCP)
    6. National Down Syndrome Society
  4. Read!!!  Support publications. Encourage investigative journalism. Join newsletter lists. The library can help you learn about public policy.
  5. Most important……VOTE.

We saw the community outrage when a Chicago area teenager with intellectual disabilities was restrained, taunted and abused by four individuals…and live streamed!!! Not only did law enforcement react but we saw a national uprising. As Peter Berns, CEO of The Arc shared “…it’s our collective responsibility to respect and stand up for the rights of people with disabilities.”

As one of our prior presidents said, “The best way to not feel hopeless is to get up and do something.”   Harriet Tubman chose that option and look what she accomplished.  Or maybe you like Dr. Seuss who said, “Unless someone like you cares a whole awful lot, nothing is going to get better.  It’s not.”