I have found that too often in the professional world of work, disabled adults are celebrated for overcoming barriers that able bodied people can’t begin to fathom. By letting it be known that the workplace employs individuals living with physical or mental disabilities, the employers are wonderful people who practice inclusion, equity and diversity at the highest levels of the definition.
Well, from where I sit, it depends on how you present your disability, and what accommodations it requires. Let me explain.
I have been fortunate enough to be fully employed during my entire adult life. To be clear, I have enjoyed the majority of my time spent working. I have also learned that the most effective practice for my physically disabled self has been to stay quiet and never complain. During my teaching career, I was easy to accommodate: classroom on the first floor, accessible restroom already inside the school, handicapped parking space right out front. All these things are already required by law.
I never complained about not being able to reach or use the photocopier. I didn’t bring up the fact that I couldn’t open my classroom door by myself (or any door in the school for that matter). I didn’t speak up when I was unable to access anything in the staff room like the drink machine, refrigerator or the coffee machine. It was always easier simply to ask a colleague. The message that I learned was: stay quiet, act normal, cause little to no friction and don’t ask the school district to spend any money or call attention to myself. Can’t reach the wall phone in my classroom? Ask the custodian for a phone cord and put the phone on a desk. Can’t get all the way across the room in time? Have a student answer it. In short….be quiet and solve the problem.
I have heard this idea referred to as “respectability politics.” I like it. I have worked with enough autistic children to wonder how they fare as grownups in a work environment that has way too much stimulation, or a million distractions. I have worked with mentally disabled kids and I wonder what will happen as they become adults and have shown me that they are brilliant in their joy of sharing ideas and their alternate ways of connecting with the world, but are they too radically different from the definition of mainstream society that they will not find gainful employment? It leads me to wonder how many disabled people are passed over for jobs because the employer thinks they may be too expensive to accommodate or would require an entire staff to receive training on how to communicate with them?
Once upon a time, the President of the United States hid the fact that he used a wheelchair because showing his disability in full would make him “look weak.” This is the society that disabled adults face.
I have a friend who is a lawyer. He is extremely intelligent, educated and well read. Because he uses a power chair, a sip and puff, and requires a personal assistant, he was unable to find work at any of the many law firms that he applied to after passing the bar. Each and every place told him that he was “not the right fit.” Isn’t that the way the majority of employers dismiss people without telling them why? Or perhaps they are too cowardice to speak the truth, lest they look bad. My friend opened his own practice and does quite well. He laughs as he tells me that he almost never goes to court as the opposing side usually worries that any jury will take his side, seeing him as a disabled hero lawyer. That’s one way to get a settlement I suppose…
I feel that we have created a system where survival in the workplace for disabled adults depends on compliance. And those who can’t, or won’t, comply are forced out, often by the very people who hired them. This is inclusion? Not so much.
Six years ago my teaching career met the beginning of its end. I’ve written about it before, and I don’t think about those awful months too much anymore, but one thing has stuck with me since then. Suddenly and without warning, my employers saw me as a big problem. I was cast aside from the main part of my job. When the dust settled and I decided to dig deeper, I found some shocking information that went back long before 2019 when the walls came tumbling down.
In 2015 I was denied, through the school district sponsored health insurance, (Anthem) my request for a standing wheelchair. In my appeal, I wrote about being able to once again stand in my classroom to instruct my students. The story reached the local press and was picked up by 2 Boston news stations. I was interviewed and it was framed as “local guy raises money against big insurance company.” I shared this on social media.
Years later I learned that the insurance company called my superintendent and asked him to “slow me down.” At the time of this fight going public, I received a visit from said superintendent who told me that I was breaking district policy by having high school students following me on social media. I was given a highlighted policy that was read aloud to me in an office meeting with my principal, assistant principal, superintendent, and my union rep. I was treated like a child and told that if I didn’t purge my social media, that there would be further disciplinary action taken. My principal and assistant principal didn’t say a word. Everyone knew the subject of the meeting ahead of time except for me and the union rep. The district just told me that it was a mandatory meeting and that I should bring a rep. They do this all the time with staff at all levels. It is intimidating and stressful, often happening in the middle of the day, which makes it awfully hard to focus on teaching.
During this time, I was also having a problem with hemorrhoids (one of the reasons for the need for a new chair, seating, and the ability to stand). I spoke with my doctor who wanted to “have a look.” I went to see him one afternoon after taking a half sick day from school. After the appointment, shortly after noon, he told me to go home and get off my butt and onto my side if possible.
I went home and had no way to do that until after 3pm when my wife would be home. In the meantime, I got a call from the Boston Fox News Channel. They had heard about the standing chair but wanted to call out the insurance company, and, hopefully, shame them into paying for the standing feature on the chair. They wanted to be at my house within an hour. I said yes. This also turned out to be fraught with trouble.
The piece aired, named Anthem and got a statement from their publicity people. They moved the needle, as I later received calls from the New Hampshire Governor’s office, a United States Senator’s office from New Hampshire, and 2 state representatives from my town. All of them asked how they could help. I should mention that the wheelchair cost was $35,000 with $3,500 of the total cost going to the standing feature. Anthem was willing to shell out $32,000 for the chair, but not the rest, since, according to them, standing was “not medically necessary.”
The next day, I was called in to the principal’s office and asked to produce a doctor’s note to explain my half a sick day. I called the doctor and he faxed a note over to the school district. I was told the next day that the note “was not specific enough” and I needed to obtain another one. If I had stopped to think, I would have contacted my union president, but instead I drove to my doctor’s office afterschool to explain what I needed. He was willing to comply but said that I was pretty much being harassed as one note should be more than enough.
I got two copies of the letter and slid one under the door of my principal’s office (it was now 5pm) and then drove to the central office to deliver a copy to the superintendent in person. He was not there, and so I left it with his secretary as she was leaving for the day.Thinking about this the next day at school, I asked my principal if he had received my note and asked why he wanted 2. I got no answer and then told him exactly why I visited the doctor. When I got to the hemorrhoids part, he was uncomfortable. I told him that I was done with the bullying and the unwanted attention. Without exact words, his response indicated that I was on the radar of the central office because of the press making the insurance company look bad, which in turn could make the district look bad. I certainly didn’t see it that way. Little did I know that the insurance companies use some secret math and backroom meetings to set rates based upon things like “uses of parts of the policy” and “number of visits to healthcare professionals.” Each year, in the spring, Anthem would send a representative from a group called Health Trust (which acts as a liaison between Anthem and the employers who provide the policies) to speak with us, outline plan changes and inform us of the rate increase for the following year.
Following this, there is an “open enrollment” period where we can switch plans, save them money, or be phased out of plans that they are cancelling as soon as they find a way to offer us less and charge more. They even refer to the most expensive plans with the best coverage as “Cadillac plans” as if great coverage is a bad thing. The snake oil meeting each year used to leave me angry and unhinged as we were told to shop around for certain procedures that would get us a small kickback. Hey….do all of your blood work at Quest labs and you get $25 each time you go!
Cheapest kidney replacement might get you $1,500 in cash. Sound shady? It is. Then of course I learn that I was too vocal and the company can’t legally boot me off the policy, so instead they chose to harass. Lovely.
In my mind, I began to think that being disabled AND speaking up was a slippery slope. The following year, my pulmonary specialist noted that my lung capacity and strength had decreased and it would be a good idea to ask for air conditioning in my classroom in order to make it a bit easier for me. I refused to ask the school for several years, although a bunch of colleagues thought that I was crazy. I told no one what went on behind the scenes with the standing chair (which I eventually got, but only after doing a GoFundMe).
I had learned how to be uncomfortable, but stay silent. I had become an expert in dealing with things that were out of my control by solving problems without bringing attention to myself. It wasn’t strength, it was survival.
My school district could have lined up behind me to help push the insurance company to make a one time payment for me to stand in my classroom. Instead, they bullied me, tried to silence me and instead of helping build strength in their hiring of a disabled employee many years earlier, they chose to manage the optics.
I never forgot that. It only got worse from there. But that’s for another time.
Stay safe, stay awesome, and stay tuned.
Patrick moeschen 