“All I have is a voice” is a quote from W.H. Auden. I was looking for a pithy way of saying my main thought this morning and stumbled on that quote. It’s not just pithy but it is my full truth right now. As my body slowly (and sometimes dang quickly) betrays me, sometimes all I have left is my voice.
I have kept that voice depressed (yes, I have not spoken up as I wanted). Many that know me think all that I am is a voice, a mouthy old lady who just won’t shut up. I have kept silent on too many things for way too long.
My volume has risen as my body has failed.
I have always felt keenly the plight of the poor as I have walked that fine line between lower middle class and extreme poverty most of my life. I have always rooted for the underdog, the principled underdog. I have always understood what’s it’s like to be different, whether that difference is manifested by religion, race, gender, sexuality, family, or most recently disability.
I was raised in a “genteel” southern family in North Georgia. The words of my grandmother still haunt me, anger me. “Act like a lady.” “You shouldn’t….” Why aren’t you like (fill in the blank)?
We were taught to say only nice things, act a specific way (I was a tomboy!), date the “right” people, have the “right” friends, don’t speak up. I rebelled.
I suspect no one that knows me is surprised at that. What most don’t know is how much I didn’t say for much of my life. I have stood my ground and gotten fired or quit jobs rather than open my mouth. My last full time employment resulted once again in getting fired. Unfortunately, part of the difficulty there was physical and not my mouth (my lack of tact and diplomacy “probably” contributed).
I didn’t tell my future employer that I had some physical issues. After a month or so, I asked for some accommodations, a stool for my short legs and a better office chair. I explained that I had some back problems. I don’t remember exactly what I told them but their response was appropriate, “What do you need to do your job?” I told them that working remotely from my house (5 minutes away) would be the best thing for me. I’m a web designer. I don’t need to be on site except for meetings. Next thing I knew I was on probation and then I was gone. The good news was they were scared I would sue, so they gave me an excellent separation package after only 4 months of employment.
It was the start of the recession of 2008. We lost everything when we had little to lose in the first place.
So once again I started over. For a few years things went okay. It was hard for me to get to meetings to network and learn but I kept at it and finally attained a reasonable income for a year or so. Then my body spoke up.
Another surgery, more body weirdness. My husband was already disabled. I had to keep going. I was too close to retirement to even begin applying for disability.
I finally got my own disability placard. I finally had to stop managing my husband’s medical care. I finally had to admit my physical issues were overwhelming me.
2016 was a horrible year. Major surgery Jan 15 – met my deductible and year cap! Another surgery in June. Another in October and then 3 weeks later, developed a multi-bacterial infection from the surgery. After a week in the hospital, I was moved to rehab. Several nights later was the presidential election. I awoke around 3 a.m. with the nurse looming over me. I asked who won. Her response was foul in language and information. I conked out immediately. I was too drugged to be able to react.
So the present political situation started at my lowest physical point. I spent 5 weeks in rehab and had another surgery the next July. I was too weak to do much for a long time. I gave up most activities. I retreated further and further from “real life”.
I spent the next 3 years recovering and nearly 4 suffering through this insane administration.
But my voice.
“I’m for truth, no matter who tells it. I’m for justice, no matter who it is for or against. I’m a human being, first and foremost, and as such I’m for whoever and whatever benefits humanity as a whole. – Malcom X”
As my body betrayed me, I found my voice.
As I resorted to crutches this past year, I found my voice.
As we quarantine due to hubby’s immunosuppressants in the safest state in the nation, I raise my voice.
As the campaign season begins, I continue raising my voice.
I speak as a fully disabled person who spends her time trying to figure out how to get things done during good times. During the pandemic, I speak because I can do little else.
One of the largest problems for any smaller community of activists is having enough voice to be heard. A major newspaper actually had an article about mobility issues on streets where restaurants have moved into sidewalks. I was surprised. More needs to be said and said louder and louder. We need to be heard.
Icebergs and the ADA
But that’s the tip of a very large iceberg. July 26 was the 30th year anniversary of the passage of the ADA, the Americans with Disabilities Act.
I suspect many consider the matter closed. We have a law to protect us!
Compliance is another matter as in general compliance has to be forced on a local level. One incident in Charlottesville, VA brought me in contact with the city office in charge. I got my resolution. My only official complaint got action because the city had an employee (a wheelchair user!) and an office designated for that specific purpose.
But in small towns and maybe very large towns, this becomes a possibly impossible situation. For example, I returned to a coffee shop in Portland, Maine, that I had frequented several times before. This time I discovered the handicapped spaces were gone. This is simply illegal.
I mentioned to the employee that waited on me that they needed to replace that spot, now covered with yellow no parking lines. She told me I could park there – you know, that spot they could tow me from? Since I don’t live there and it is a large city, I didn’t pursue a fix.
In Charlottesville, VA, a large shopping area placed most of its disabled spots behind the buildings! No access, you have to circle around a block of stores to get into the stores. Their on-site maintenance guy told me that he had voiced his displeasure to the corporate owners. They were not breaking the law; they did not care. They only have to have a percentage of spots, there is no mandate about where those spots have to be.
While I was still getting around okay, I could drop my husband off at the door. Once I had to start using the disabled spots for myself, a phenomenon I had noticed in passing was thrust into my lap. They don’t want disabled spots in front of their doors so they will remain compliant by putting the spot as far away from the doors as they can.
Too many disabled are not in wheelchairs. According to the CDC, the number of adults aged 18 and over unable (or very difficult) to walk a quarter mile is 19.4 million, 7.8%. I’ve never been able to find statistics of how many are wheelchair users versus those of us who can walk – just not for long enough distances and need disabled access. I can promise you that a vast majority do not use a wheelchair.
The biggest issue most folks struggle with is physical effort. The more effort it takes to get somewhere or enter a building, the more tired a person becomes. (If you’ve never heard of spoon theory, check this out.) We don’t just need access to physically move. We need it in order to be able to accomplish our goals, run errands or even just have a good time.
We need disabled spots at the front door.
So in reality the ADA is only a small step towards providing assistance to those who need it. It is generally unenforced and sometimes just words on paper. In order for real change, what may be necessary is legal actions – that cost money and energy most disabled folks simply don’t have enough of. Much more needs to be done.
But I have a voice. I may not be able to show up at a protest or a meeting; I may not be able to lobby lawmakers in person; I may not have the energy to affect much change.
