Using My MS Voice

MS is the abbreviation for the chronic degenerative autoimmune disease multiple sclerosis. However, those very initials could also stand for many snatches, because that's exactly what it does: it snatches and chips away at your functionality until you are forced to live a new normal. New normals, which can include negative impacts on where you go, how you get there, if you can get there, activities you can partake in, and more.

A new world of limitations may be my portion, but I learned to advocate for myself and others like me with something that was not snatched from me: my voice, my 'MS Voice.'

Calling for greater accessibility

For example, when I began to see and experience some establishments providing accessibility and accommodations by only doing the bare minimum, I wrote an editorial for the newspaper titled just that – The Bare Minimum – and discussed the issue. I referenced a hotel room noted as handicapped-accessible, yet it was a regular bathroom simply with a safety bar inside of the tub. Or an appointment that I went to with a slight ramp outside of the building, yet the office was on the second floor – and there was no elevator.

I wrote "Recognizing the Ignorance Surrounding Disabilities" for Multiplesclerosis.net addressing the same. At the least I can use my 'MS Voice' to raise awareness of such issues.

Writing to government officials

Another and more recent example is when I realized my city's Paratransit didn't operate on Sundays in my particular county. This hinders me from attending church. I again used my 'MS Voice' in the form of a letter to the Department of Transportation, CC'ing our governor. In my letter, I first shared with them that I live with progressive MS and face many difficult challenges daily. So I find it imperative to do what I can while I can to curtail regrets, identify coping tools to keep me grounded, and to recognize and respect the joys I'm blessed with in spite of my circumstances.

I then explained to them that church attendance is an enjoyable, refreshing tool/activity that I'd love to partake in again to not only enhance my quality of life, but also positively contribute to my overall wellbeing. At this juncture in the letter, I explained that I must rely on vehicles with wheelchair accessibility due to my impacted mobility. Yet the Paratransit doesn't operate on Sundays, creating a hindrance for me to get to church.

I then made my appeal to please provide Paratransit services on Sundays. My impassioned plea at the close of the letter was to those who can make a change to please consider doing just that: making a change. My request may or may not make a difference. I'm just proud that I have the ability and wherewithal to use my 'MS voice.'

I can still be heard

So, MS has snatched a lot, but it hasn't snatched it all. I can still be heard. And I will continue to use my God-given 'MS Voice' and persistence to be a catalyst for awareness and change!

Editor’s Note: We are extremely saddened to say that on December 2nd, 2024, Dianne Scott passed away. Dianne’s advocacy efforts and writing continue to reach many. She will be deeply missed.