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Why This Sign Means Inaccessibility for My Son With a Disability

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I hate this sign. Every time I see it, I hate it more. And it’s not for the reasons you might think.

I don’t hate women, or wheelchair users. I’m not a transgender woman and made to feel I don’t belong there.

It’s because my 7-year-old son has dystonic cerebral palsy, and uses a wheelchair. He lacks the upper-body strength and torso control to use the toilet independently, or even with my support, despite the occasional availability of handrails. It’s because he needs to be  changed, and there is no place to put him other than the floor. It’s because I have to lay my son down on disgusting bathroom floors, which are covered by an average of 77,000 bacteria. It’s because he is getting bigger and heavier every year, and it’s getting harder on me to lower him safely to the floor and bend down and lift him again. It’s because as he ages and grows wiser, it is getting increasingly uncomfortable for him and I to go together to a room set up for girls and women.

I was naïve, I admit.

I thought that just sharing our struggle would be enough to inspire people to support Changing Places. I thought when I told people about exposing him to these germs and situations, people would understand. I thought sharing about how we have changed him in the back of our car, exposed to the elements and trying to keep his privacy, that people would “get it” and help make improvements for people with similar problems. I thought people just needed to become aware, and they would do the “right thing” to make his world accessible on their own.

I thought wrong.

As it turns out, it seems people with disabilities just don’t rate high enough on the social totem pole here in the USA. My son does not have a convenient, private place to be changed anywhere other than at home. In fact, when he lays on the floor on our mat in the public restroom, on the dirty, germy, floor that thousands trample on, one can see him under the stall doors.

It was suggested to me by an airport representative that we could use the nursing room at a major local airport, as there is a bench there.  As I was once a nursing mom, I can tell you how “well” this would be received. These rooms were designed to give babies a comfortable and sanitary place to eat away from the smells and germs of the restroom. I am not willing to subject my son to the scowls of disapproving mothers on top of the embarrassment he already endures.

It’s not just us.

There are roughly 4 in 100 people that need these changes. This challenge is often not spoken about. For those with hidden disabilities, such as urinary incontinence or developmental challenges that limit full toilet training, it’s often quite painful to raise this issue. Other folks simply stay home, or cut outings short because it’s too difficult. The need is bigger than you can see, and goes far beyond my son’s needs.

The ADA has been in place for over 25 years in an effort to provide inclusion for everyone. But the minimum standards for architectural design just aren’t sufficient for millions of Americans. We need adult-sized changing-tables, unisex restrooms to allow for opposite gender caregivers, sufficient space, and lifts for transfering.

There are people who have said that even a changing table is extravagant or gluttonous. That we should “suck it up.” That we should simply adapt to the world and not expect the world to cater to us. That we shouldn’t expect large businesses or locales to finance changes for just a few. But we are not just a few. We are 4% of the population in the U.S. alone.

No one complained about extravagance when restrooms started installing automatic toilets, hand dryers, seat covers, and hooks for a purse. These modern conveniences are missed when they aren’t there. And I ask these people who say we are requesting too much… What if you became disabled tomorrow? Or your loved one? The disabled population is the biggest minority that anyone could become a part of, at any time. Would you be just fine laying on a dirty bathroom floor?

It’s not a matter of money. It’s a matter of whether you think millions of us are worth it. That we deserve the basic right of human dignity.

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Originally published: November 22, 2016
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