Feature Issue on Self-Advocacy for People with Intellectual, Developmental, and Other Disabilities

What Are We Advocating for Today?


Max Barrows is the Outreach Director of Green Mountain Self-Advocates. He may be reached at max@gmsavt.org.

Karen Topper is the Administrative Director of Green Mountain Self-Advocates. She may be reached at topper@gmsavt.org.

Mike Rogers is a Regional Organizer for the Self-Advocacy Association of New York State. He may be reached at mrogers@sanys.org.

Jossie Torres is President of People First of Connecticut and a Self-Advocate Coordinator for the Connecticut Department Developmental Services. She may be reached at jossie.torres@ct.gov.

Max Barrows and Tracy Thresher stand at a podium with microphones in front of the Vermont State House during a rally about healthcare rights. Barrows is speaking and raising his arm in the air.

Max Barrows (right) and Tracy Thresher at the Vermont State House advocate for healthcare as a human right.

 Since March 17, 2020—four days after the United States declared COVID-19 a pandemic—the Self Advocacy Resource and Technical Assistance Center (SARTAC) has been hosting national meetings online. We have been bringing more than 100 self-advocates from at least 30 states together to meet twice a week. It makes us feel like we are in a community. Max Barrows from Green Mountain Self-Advocates has used this opportunity to facilitate many discussions with his peers. This article voices a few, but not all, of our priorities. Here is what self-advocates are saying:

Do Not Assume What We Can Or Cannot Do

 Ableism is alive and well in 2020.

People with disabilities are looked down on more than looked up to. Society continues to send a strong message that we are not capable, we are too slow. Honestly, for some people with disabilities, the people in our lives laugh at us when we talk about our dream jobs. They think it will never happen. It ties into the false idea that people with disabilities are not able to do a lot of things for ourselves, like adults. Unfortunately, it is a pretty broadly accepted mindset. It is huge. It casts a shadow over our desires to work, go to college, get married, have kids, the list goes on and on.

“At work when there is a big load of groceries, I try to keep up. It is hard to keep up. It’s fast-paced, and I cannot do a fast pace. At night, I write in my journal about work. I tell myself that, ‘It is okay to be slow.’ ”

 People think we do not understand what is going on. People often assume that we need help when we do not. They jump to give directions without giving us a chance to figure something out on our own. People set limits on what we can do without asking us. They set low expectations.

We are the ones who know best about what we want to try to do.

“My job took me on. They are not trying to change me. They like me. I feel a part of their work family.”

Give Us Equal Access To Health Care 

The COVID-19 pandemic is showing the discrimination faced by people with disabilities. Our concerns about not having access to health care during the pandemic are real. It is 2020 and self-advocates had to fight hard to get access to treatment and life-saving equipment. People with disabilities, sick with the virus, were threatened with being placed in the back of the line. We continue to have limited access to masks, hand sanitizers, and thermometers.

People with disabilities have always felt isolated. Now, it is worse due to stay-at-home orders during the pandemic. We are not able to get accessible information about the virus. We are being left behind. The information that is given to us is in words we do not understand. People are confused and it is very frustrating.

We need a national focus on health disparities. Now, more than ever, the Self-Advocacy Movement is speaking up to eliminate ableism in healthcare and in society as a whole. We created plain-language booklets about COVID-19. We are doing the best we can to advocate and hold meetings via Zoom during the pandemic. Our access to policymakers has been interrupted. So, we are using technology to bridge the gap.

Listen To, And Believe, People Of Color

We need to start thinking differently. Racism and police violence are unacceptable and inexcusable. This is another one of those times in history when racism is huge and obvious. We need to make a statement that is powerful enough to call for a change in policies and laws. We need to protect the people that are being abused.

Many people who get services experience segregation, loss of control, and a lack of access to their community.

It's about respect. It's about dignity. It is about equality. It's about treating people of all cultures and backgrounds as human beings, as people who have human rights that should not be violated.

We need to be accountable for what we say and do. Self-advocates must educate each other. In order for things to change, we have to change. Ask yourself, “What am I doing? What am I doing in my life to change things? Am I repeating the pattern? Am I repeating the hurtful words that I've heard other people say?”

Someone in your family might be quick to blame things on people from a certain culture or background. Often, people pass on what they've heard. They pass on the hate. But, we have got to be the ones to change things. You don’t have to go by what you’ve been taught. Question opinions. Call people out for what they say and do. Do you want to be the people that repeat history?

Relationships are where change happens. Presentations are okay, sometimes people learn stuff, but then they go back to their life. They go back to doing the same stuff over and over again. So, let's all get together and make a change. Adopt the policy of getting to know the people around us. Listen to Black and Brown people. Believe them. We need to understand where somebody is coming from. That gets us closer to change.

We Deserve Meaningful Jobs

People with disabilities need to make money just like everyone else. It is important for people to work because it’s a joy to be with other people and you get a paycheck. Look outside of the disability service system for new ideas on how to get people working. Sometimes, disability professionals are not flexible enough and have too many preconceived notions about what we can do.

People with disabilities have a lot to offer. We give as much as we take. We are an important asset to society. When people work alongside each other, no matter what, it’s a win-win situation. We very much contribute to the community, and to overall society as well. Working helps us to discover our strengths. You never know what you are good at until you give it a try. And, working is one way to open that door.

Respect Our Love Relationships

We want what you’ve got! We are advocating to eliminate the marriage penalty that reduces Social Security and other benefits for many people with disabilities when they get married. People with disabilities are sexual beings, but sex education is rarely talked about. When people have information, they can make better decisions. It’s okay if we need help understanding how to have sex safely. Many people with disabilities identify within the sexual orientation and gender diversity community, and many say this can feel like having to come out twice. We have the right to spend time with people of our choosing.

We are not able to get accessible information about the virus. We are being left behind.

Close Segregated Settings

This virus makes it crystal clear. Living in group settings can be dangerous. Many people who get services experience segregation, loss of control, and a lack of meaningful access to their community. Let’s celebrate the 30th anniversary of the Americans with Disabilities Act (ADA) by getting more supportive living.

We have the right to decide where we want to live. We need a safe place to call home. Whether we live alone or with others, we should get the support we need. We need to be free to come and go as we please. We listen to your advice, but the bottom line is we have rights. We have the right to eat whatever we want. We have a right to privacy and want your support to have friends over.

Self-Advocacy is Essential

We need more self-advocacy groups. Peer-to-peer connections are the heart and soul of our movement. You realize you are not alone. You meet others who have faced the same or similar challenges growing up as a person with a disability. Through this, we continue to learn from each other on how to speak up for ourselves. We believe in ourselves and we empower one another. This is why the peer to peer connection is our main power source. It continues to give us strength as leaders coming together.

We must have honest conversations about racism and ableism in our self-advocacy groups. Keep talking. Get involved in events that positively affect your community. Make sure that things shake. Be the change that you want to see in the world. If you want something to change, then change it.

Want to Learn More About Self-Advocacy?

An advertisement promoting Self-Advocacy Online shows a map of the United States that highlights locations of self-advocacy groups. It has snapshots from the website showing culturally diverse self-advocates, along with information on getting involved in self-advocacy, the concept of employment first, futures planning, and more.