Using My MS Voice
Last updated: May 2023
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!
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: