In one of my college classes, someone shared his opinion that when Patrick Henry said “give me liberty or give me death,” he meant that if he could not be in control of his life, then he didn’t want to live.
On March 27th, Mark Smith, a businessman with cerebral palsy was forced off an American Airlines flight because he had a disability. When writing about the experience, he said, in part:
“I was dumbfounded. American Airlines personnel were refusing to transport me because I am a person with a disability who uses a wheelchair. This scene was unquestionably a violation of a number of federal laws, and I was stunned that it was happening to me. However, in that moment, I kept all emotions in check, explaining that my wheelchair was, in fact, airline compliant…The American Airlines group’s response was simply to continue removing me from the plane in a hurried fashion – Captain’s orders. I knew then that there was no reasoning with this dehumanizing situation. Compliance was clearly my only option, as is often the insidious nature of blatant discrimination.
…[A]ll of the other passengers watched, silent. Although many clearly heard that I was being removed because American Airlines didn’t want me and my wheelchair on the flight’s manifest, no one questioned why, in 2017, a businessman with a disability was being ejected from a plane? In that moment, I realized the gravity of it all: I was being stripped not just of my civil rights, but of my humanity. For the first time in my life… I was discarded as a human being – literally.” Read the full post on his blog here.
I have read that last line many times since I heard the story. And these days it has resonated with me. While I have never been forced off a plane while everyone remained silent, I can relate just a little.
For many years in Kansas, what is now the Department of Children and Family Services had a rule. If you had a disability and required the assistance of caregivers, you could make and keep $165 of whatever salary you earned per month. After that, you had to pay half of your salary to DCF each month to offset the cost of your caregivers. Therefore, it didn’t make a whole lot of sense for people with disabilities in my situation to work, because you would lose nearly half your salary in order for Medicaid to pay your caregivers, and they were the ones who made it possible to work. That is, my caregivers help me get out of bed and into the shower and to get ready for the day. Without that assistance, it wouldn’t be feasible for me to have a job since I cannot do those things on my own. It was a no-win situation.
Because advocacy lives in my soul, I had the honor of being part of a statewide committee that set out to change things. It took several years, and lots of testifying in front of state senators and representatives, but on July 1, 2007, the WORK portion of the Working Healthy program when into effect. The bottom line means that Kansans with disabilities can now earn almost $60,000 per year without losing the caregiver coverage they require in order to work. And all it costs is a small monthly premium.
One of the things that appealed to me about the program was that it gave consumers a choice. People could either go through an agency to get caregivers or they could self-direct their services. Going through agencies works for a whole lot of people, it has never worked for me. The last three times I have gotten my caregivers through agencies, two of them stole money and the other tried to hit me. I literally shake with terror at the thought of going through an agency again.
But aside from all of that, the agencies would send a different person every shift, so I had to spend a whole lot of the time explaining what needed to be done. Then do it all over again the next shift, without an end in sight. It also isn’t unreasonable to be uncomfortable having someone I have never met help me in and out of the shower and help me get dressed in my home. I am okay with how vulnerable I am. That is my life. But it should be my choice who I am vulnerable in front of. I am 48 years old.
So I took on the responsibility to advertise, recruit, hire, train and manage my own caregivers. And that is a huge, sometimes totally frustrating task. But I took it on willingly because it meant that I had the power to hire who I wanted. And after almost 31 years of hiring people to assist me, I have determined that college students are the best fit. They have more flexibility in their schedules than most other people, and because most want some experience to put on a resume, they have more motivation to be here.
A few months ago, the state required background checks for every caregiver that was hired. I get it. They want people with disabilities to be safe. More recently they made another rule that background checks have to come back before a caregiver can start working. The process takes about three weeks.
That’s a problem.
What it means for me in real life terms is that after I hire a caregiver, they can’t start working for three weeks, which means that they won’t get paid for about five weeks. I’m not sure who will stay with me if that is required.
I am willing to bet that the people who made that rule do not have obvious physical disabilities and have never been dependent on anyone else to meet their basic needs.
When I talked to the powers that be and tried to explain my situation, they told me I was welcome to go through an agency to get caregivers. From a place of advocacy, I asked if it would help to contact my state representative. “If you do that,” I was told, “I would be the first to tell him that you have the opportunity to use an agency, and you are simply refusing to do so.”
In other words, I was squashed like a bug.
I have talked many times about how I don’t have a whole lot of power in my life. I can’t drive and I can’t put on my socks and shoes, and there are many other things that cerebral palsy has made sure I can’t do. My power comes from being given choices. My power comes when people consult me about issues and we compromise before anything is set in stone. And being given that kind of power is what gives me the dignity I deserve.
I might not physically die when my power is taken away and I am told there is nothing I can do about it. But over time my soul might.
Give me dignity…