The Important Issues Self-Advocates are Speaking Up About

In the fall of 2011, Self-Advocates Becoming Empowered collaborated with eight self-advocacy organizations to run focus forums with 10 to 30 peer leaders with developmental disabilities. Here are their responses:

People First of Alabama:

• Transportation—in small towns, there is limited transportation service but they can’t take them where they desire to go (example: shopping, or other social events are limited)
• Stop the “R Word”
• Shut down Partlow (Institution) move into independent housing
• Closing sheltered workshops

People First of Arizona

• I have spoken about the rights of people with disabilities to receive minimum wage. I have spoken about the benefits of music therapy not only for children but also adults when pay rates for music therapists were cut.
• I talked to my district representatives about my need for staff to help me in my life with other self advocates.
• Youth with disabilities as they transition into adulthood
• Change the name from MR to cognitive disabilities in our developmental disabilities services. We spoke up to legislators, educating them on what the “R” word means, and why it would be better to use “cognitive disability” instead.
• Voting
• No cuts to services
• Right to sue providers if not treated right
• Dental care

People First of Georgia

• Transportation
• Advocacy
• Closing Sheltered workshops, equal pay and making Georgia an Employment First state
• Independent living
• Housing
• Living a good life
• Medicaid buy-in
• Voting
• Marriage penalty
• Medicaid reform
• Americans with Disabilities Act and the Olmstead Decision
• Accessible businesses and sidewalks
• Transition from institutions and nursing facilities
• Advance directives
• Micro-boards
• Not having enough money to pay staff what they are worth

Green Mountain Self-Advocates

• People’s services being cut.
• Training support workers: We have a lot of stuff in common. Telling staff we might have a disability but we learn just about the same stuff as someone without a disability. Training staff that I will ask for help if I need it because I do not always need help. Talking to our legislators saying that we want to keep self-advocacy so we can speak up for ourselves. So we don’t go backwards instead of forward.
• We can be included and be a part of things
• As youth, we can keep learning and growing
• Learn how to be safe when making friends
• Voting
• Got the Respectful Language Bill passed because we want to be treated like everyone else. We do not want to be called stupid or the “r” word just because we are different.
• You want to do something, but other people say you can’t. We need to defend ourselves. I feel this is like a put down. It makes you feel like you are not going to get anywhere.
• We need jobs so we can survive and we can go out and to do stuff like everyone else. We have to pay for stuff. I don’t want to be under the thumb of the government for the rest of my life.
• Sometimes people with autism compare themselves, high functioning verses low functioning, so being involved in self-advocacy diminishes this. We may be different but we all have so much in common.
• Advocated to go to college

Montana Youth Opening Doors Through Advocacy

• Captioning on YouTube and video clips shown in class and in the University theatre.
• FM sound system at the Masque Theatre so the public and students who are Hard-of-Hearing can benefit from the sound amplification according to the rights detailed in the ADAAG guidelines.
• Access to accessible PDF files on the online component of university courses.
• Need for CART captionists, who are significantly better quality than C-Print and Type-Well captionists, because they provide word for word captions of college lectures.
• When I went to the University of Montana I had to take my biology class online which wasn’t as good because I couldn’t use the lab gear. So I filed an OCR complaint letting them know that the University of Montana was not letting people take regular classes
• I went to the legislature to talk about how important I thought would be to teach  disability history in the high schools so that everyone could have that part of history that people with disabilities can be a part of. And it was important for me because it gave me a new sense of family, finding out about a whole culture and history that is shared.
• I spoke at legislature too about money to help students like me transition out of high school.
• I got kicked out of high school because my hair was spiky and I thought it wasn’t fair. So I talked to my friend who was the son of the superintendent and got them to hold a big board meeting and make a big deal of it. Somebody started a petition of why I should be kept in school and a lot of my friends signed the petition. So I stayed in school.
• When I was at my IEP meeting, I told them that I wanted to go to the College of Technology and now I do.
• I don’t want anyone else to make my choices for me. I am taking control of my own services and I have the right to choose my services and live independently the way I choose to do it! And I am doing it!
• I ended up breaking my femur and when I was recovering I needed to go to a nursing home. When I was spending time in the nursing home there was an instance where the headrest on my wheelchair was broken off of the chair by one of the people there. I asked to speak to the program director. She said this is why we discourage people from bringing their personal belongings! It was probably a good thing I was sedated! I was angered and let her know this is my only way to move, it is my wheelchair not my personal things. I was able to convince her and got her to apologize for the situation and allow me a little more freedom with my equipment.

Our Voices Count, Too Self-Advocacy Council of South Carolina

• This year, I have spoken mainly about the R-Word and no more stolen lives.  I got a chance to participate in a rally at the state house.  It was a great experience to see so many self-advocates fired up about some of the same issues and more.
• The R-word has been the best topic for me.  I really wanted to make sure our state finally started to take some action.  We finally have some takers.  We had legislation pass this year.
• Every chance I get, I am always talking about no cuts to our budget and rights and responsibilities. It is important to keep our issues in the spotlight even when it seems like no one else is.
• Being able to speak up for self and others. It makes me feel good and that I have purpose.
• About respect

Self Advocates in Leadership (SAIL) of Washington

• The cuts they are making to Medicaid Personal Care and changing the national wording to be broader to cut people.
• I spoke to my Representative about the long term way of looking at people with disabilities is the right way. Long term thinking allows for better services, respect and quality of life for all citizens. Try to think beyond the current crisis.”
• Anti-Poverty work which includes keeping health insurance for all people. I was involved in the sleep-in with SEIU Care Workers. Also advocated for closing tax loopholes.
• Spoke up about transportation and Medicare/Medicaid.

People First of Washington

• Cuts in the state budget to the education department, Medicaid/Medicare (using the little blue cards we sent to the governor) and our centers for independence.
• Poor transit service and possible discrimination of people with epilepsy
• I have advocated for closing institutions. I don’t like them putting kids in institutions. And the people in there should be out.