Longtime Independence Care System (ICS) member, and founder and first executive director of Bronx Independent Living Services (BILS) Barbara “Bobbi” Linn was one of several 2019 honorees inducted into the New York State Disability Rights Hall of Fame.
In addition to being a powerful advocate for countless individuals with disabilities and an influential driver of policy over the course of her career, Linn is a moving writer. “Ode to a Diet Coke; Disability, Choices and Control,” written after a health crisis in 2008, is Linn’s insightful, poignant memoir on battling disability discrimination and navigating life with cerebral palsy.
Linn—known for her warmth, kind spirit and penchant for helping others—was recognized by the New York State Independent Living Council (NYSILC) for her lifelong achievements on behalf of people with disabilities in society during a special ceremony on June 13 at the Rivers Casino Schenectady in Albany, New York.
ICS recently spoke with Linn about her induction and her lifelong advocacy efforts, the importance of ICS and her concerns about the mistreatment of people with physical disabilities amid a changing and dysfunctional healthcare system.
First, congratulations! How did it feel to be inducted into the NYS Disability Rights Hall of Fame?
They treat you like royalty. I thanked people for being there. I thanked the council. What I said in my speech was, it was a real honor to be with the people who lobbied, who got arrested. I called them badasses.
It was a terrific turnout. Denise Figueroa, executive director of the Independent Living Center of the Hudson Valley, was also inducted. I remembered my parents. Friends from BILS were there. My niece and her husband traveled 11 hours to be there. A friend from Brooklyn and her husband came. I got to choose who introduced me, and I chose Joe Bravo, executive director of Westchester Independent Living Center (WILC). I’ve never felt like a queen. But I felt like a queen for the day.
You’ve been a staunch disability rights advocate for years—what’s your perspective on today’s healthcare landscape?
I feel we’re really going backwards. I’m worried about Concepts of Independence. [Governor Andrew] Cuomo is beginning to look a lot like [President Donald] Trump. I want to know what will happen to homecare. As people with significant disabilities, we come with a money cost, but that doesn’t mean we should be stuck in institutions.
How important is it for people with physical disabilities to remain politically and civically engaged?
It’s critical. On the federal level, they’re cutting critical programs. It reminds me of the Reagan years, where people on Supplemental Security Income (SSI) and Social Security Disability (SSD) were thrown off the program without any evidence that their disability had improved. They targeted people with disabilities—they knew people probably didn’t have the support system in place to fight back.
You get sad when you look at the bigger picture. The changes we were able to make were only possible because we were living in a democratic society. If Trump wins another four years, I am worried about the state of the democracy. What happens on the federal level affects the state level. That’s why I’m committed to going to the Civics League for Disability Rights meetings. It’s very important that we stick together.
What would you say are your greatest accomplishments?
I’m very proud of founding BILS. We really made good strides. During that time, federal legislation changed, so the independent living councils became autonomous and had a bigger say in what happened in independent living in the state. I think we created a good foundation and people continue to benefit from it.
What’s your hope going forward for healthcare, especially for people with physical disabilities?
Everyone is talking about Medicare for All, but Medicare today will only provide limited homecare, which wouldn’t be enough for me or many ICS members. I would hope for a Medicare package around homecare. That would benefit people like me and other ICS members.
What comes to mind when you think of ICS?
You have to remember that I’ve known people like Regina Martinez-Estela for years. And Marilyn Saviola and I go back years. With ICS, the word that comes to mind is ‘understanding.’ There is a definite, real understanding of what it is to be a disabled person. ICS understands why people fall through the cracks, and they work to prevent that.
Why is ICS so important?
No one in medical care understands my disability. Even the rehab doctor at the premier rehab center that I went to didn’t take the time to listen to my speech, which is affected by my cerebral palsy and can take some effort to understand. There have been studies showing how doctors freak out when they see disabled people. Doctors are like everyone else, they don’t usually have positive attitudes about people with disabilities. And with managed care, there’s less and less time to really sit with your doctor so they can get to know you.
ICS understands my disability. I’m not saying everything is perfect, but if you have a problem, you can always go to people at ICS who have a much better understanding of what the issue is.
Is there anything you still want to achieve?
I want to be able to talk to medical students about disabilities. A lot of my problems stem from people not knowing a lot about cerebral palsy. I used to be totally independent. I used to walk, to drive. The reasons I got so sick was that no one knew, and I never knew, that my brain reacted differently to medication. I also think the more medical students communicate with disabled people, the less scared they are. If you’re able to relate, it’s a growing experience.