Veteran advocate takes reins at UsersFirst

Friday, April 25, 2014

The United Spinal Association recently tapped wheelchair user and advocate Jenn Wolff to lead its UsersFirst program. She spoke with HME News about what started her on a path of advocacy and what’s on deck for the Jackson Heights, N.Y.-based association.

HME News: You’ve worked with UsersFirst before. How did you first connect with the organization?

Jenn Wolff: I was kind of under the tutelage of Ann Eubank since I met her at CELA in 2010. I found out she was an OT. I said, “I’m an OT and a wheelchair user and I want to get involved.” That was my first venture to D.C. I learned so much and it was great to feel like my story was going to make a difference in policies.

HME: Have you had trouble getting the equipment you need?

Wolff: After five years, my wheelchair was starting to rust. With the in-home clause, I actually had a K5 chair and went down to a K4. The chair that everybody was talking to me about, a rigid ultra light chair that would be better for my arms and ergonomically, was not available to me. Even the vendor was tired of advocating because people with their chairs were getting denied for 10 or 15 years. I thought, “If I’m having this problem as an OT who has access to all this information, this has got to be happening to a lot of people.”

HME: The issue with your chair wasn’t resolved. Is yours a common problem?

Wolff: It happens way too often. The way we visualize wheelchair users is as elderly and as people who aren’t active. But, growing numbers of people in wheelchairs want to be active.

HME: In 2011, you were Ms. Wheelchair Iowa. How did that prepare you for your new role at UsersFirst?

Wolff: I had to have my arm twisted because I am not a pageant person. My platform was Save the Wheelchair. I met so many other women who are leaders and wheelchair users. It was a great experience. 

HME: Why is it important for people to tell their stories?

Wolff: I want other people to feel empowered and feel like their voices matter. So many people in the disability world feel like people just look over them. This is another option to gain self-confidence and feel that you matter.

HME: Now that you’re in the driver’s seat, what should we look for from UsersFirst this year?

Wolff: We’re trying to update the website, where I would like to feature personal stories and whatever advocacy things are coming up. We’re really trying to evolve the Facebook page into a more interactive space, and get more out there to get people involved. And we’re starting with Twitter in the future.