How I Testified at the State House!

I did something really amazing earlier this month, on Tuesday September 12. I went to the Massachusetts State House with some other moms and the ARC’s Senior Director of Government Affairs and Health Policy, Maura Sullivan. Each of us, one at a time, testified in support of a bill to require Universal Changing Stations in public buildings in Massachusetts.

I have never felt so empowered as when I read my statement supporting Changing Spaces Campaign.

My statement:

My name is Marcie Randall, and I am the parent of a medically complex 15 year old boy. My son depends on a wheelchair for both mobility and support; he is not able to use a toilet for hygiene and relies on incontinence briefs.

He is currently over 4 feet tall and close to 80 lbs.

The bigger he gets, the heavier and more unwieldy he gets. 

When we are out in the community and his brief needs to be changed, we either lay him down on the floor or seat of our vehicle, or the floor of a public bathroom. If he has an appointment at a doctor’s office or at the hospital, we have to wait until we can get into a private exam room, and sometimes that is not even allowed. We have even changed him once or twice outdoors on the grass in a secluded area. Talk about being undignified.

Not only is this dirty and a wonderful way to catch and spread germs, it is also a matter of privacy and safety. Our diaper bags are overflowing with adult sized briefs, wipes, disposable gloves, disposable pads to lay underneath him, a cushion to lay underneath the pad, extra clothing that is much larger than baby clothes, and of course trash bags to dispose of the waste, wherever that might be (and hopefully we can find a bin instead of bringing it home to dispose of there).

These challenges make it very difficult to leave our home for long periods of time. There are so many wonderful things in our city and state that he does not get to experience. The lack of a dignified changing space prohibits true and realistic accommodations in our public spaces.

I urge you to consider adding Universal Changing Tables to the ADA rules of compliance.

Thank you for your time and support of this bill.

Stop Complaining, Start Doing!

This issue is something I have only complained about for the last 10 years or so, as my son reached and surpassed the 50 pound weight limit and limited length of the baby changing tables we see in most restrooms (most Ladies Rooms, that is).

I complained and yelled and screamed in frustration every time I had to change my son’s briefs (aka adult diapers) when we were out. By the way, I still do!  It’s hard enough to do it at home because he is so big and wiggly, but at least we have our designated spots and everything we need right at hand. But leaving the house…that’s a whole production. 

And then…this past summer I met this amazing mom while on vacation. We saw each other with our disabled kids, we knew we would be friends. She told me that she had recently started a local chapter for Changing Spaces Campaign, and I said “Sign me up!” 

It feels really good to finally stop complaining and start taking action, and really ADVOCATE where I know I’ll be heard.

How can you help? It’s easy. Ask your local Representatives to speak favorably to the Chairs about the bill and to stay appraised on the issue and anything else they can do to support future legislation

Nine special needs moms, including ARC’s Senior Director of Government Affairs and Health Policy, Maura Sullivan, and Representative Sean Garballey after our testimonies.

Fierce Advocate Moms at the State House with Maura Sullivan and Representative Sean Garballey after our testimonies.

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