We had an informative SCI Awareness Day at the State House last Wednesday.Thank you to Dr. Ruby for arranging the presentations. Chris Hoeh, our Chapter Advocacy Representative, had an opportunity to address the group. Here is what he had to say:

Thank you Dr. Ruby and esteemed researchers and legislators for your presentations and attendance.

My name is Chris Hoeh. I am the Advocacy Representative for the Greater Boston Chapter of United Spinal Association. Our community appreciates the need for medical research. We know that we have benefited from research and expect that Massachusetts will continue to be a leader in the field.

United Spinal is focused on improving the quality of life for individuals with spinal cord injuries and related diseases.

On this day, SCI Awareness Day, it seems appropriate for me to share ways that the Commonwealth has impacted the lives of people with SCI. The legislature and administrative branches have provided essential funding and regulations to help us live active and independent lives. But there’s much more to do.

Every spinal cord injury is different. And, as with any identity, you can’t tell much about a person just by looking at them.

I can tell you that it took incredible individual determination for each of us to overcome our challenges to make it to this event. But few of us would have been capable of getting here if it weren’t for the support provided by the Commonwealth. And many of those who aren’t here, would be here if there was more support from the Commonwealth.

MassHealth covers the cost of my medications, wheelchair and other durable medical equipment, quality medical care and personal care assistants. I’ve had to fight for these life-saving supports. And I know others who are not getting the services and equipment they need. MassHealth needs increased funding. The Commonwealth must do better.

I was able to get here on the Orange line. That works for me because Advocates and the Commonwealth have made changes to make the line more accessible. I know that many other communities in the state are using inaccessible transportation equipment. And those of us who use The Ride know how much difficulty it causes. The Commonwealth must do better.

I am one of the lucky few who was able to find an accessible apartment near my home when I was discharged from Spaulding Rehabilitation Hospital. But so many people with SCI get warehoused in nursing homes and state hospitals. A life they describe as torturous. The Commonwealth must update legislation regulating construction and renovation of housing so that the disabled and elderly can age in their communities. The Commonwealth must do better.

My employer actively worked to make my workplace accessible for me. But many employers create work spaces that prevent disabled people from obtaining meaningful work. A major improvement would be to expand the jurisdiction of the Architectural Access Board (AAB). This same legislation would also increase accessible housing but remains stuck in the Ways and Means Committee this year. The Commonwealth must do better.

The Massachusetts Rehabilitation Commission (MRC) provided funding for training so I could get assistive technology to help me return to employment and participation in community organizations. But their funding has been cut and new applicants must wait at least two months for an initial evaluation interview. These supports are essential for living a productive and independent life. The Commonwealth must do better.

We look forward to working with elected officials to secure funding and reforms to the system of laws and agencies in the Commonwealth that provide crucial services and protections to people with all disabilities. This will show that the Commonwealth understands that disability rights are human rights.

Thank you for your taking the time to listen.