Observations From Below: Delayed Gratification
Sometimes as a disability advocate, I do a lot of work that doesn’t seem to pay off right away. This makes it hard to stay motivated, especially in times when I don’t see the progress as quickly as I would like. That’s why my most recent trips have been so gratifying and have energized me. You might have wondered why I haven’t been blogging so much in the last weeks. It’s because I have been traveling and delivering speeches, as well as been taking care of my own physical needs.
I don’t think that I have mentioned this in my blogs, but for the last several years I have visited the University of North Carolina’s dental students to speak about my experience with having special needs. I’m starting to see my work improving the outcomes for me and the other patients that the dental students work with. My CP makes me an odd case for dentists, as my tongue protrudes more than those without CP. Obviously, I have had the same tongue all of my life, so my mouth developed differently. There is a big gap between my upper and lower teeth, even when my mouth is closed. I also have a hyper gag reflex and difficulty brushing my own teeth. All of this combined leads to cavities in places where dentists wouldn’t expect them to be.
My dentist has to be very patient. I’ve had the same principal dentist for over two decades, and now he uses me as one of his models and teaching tools for his students. I’ve seen a real improvement in the patience of his students I’ve been helping teach over the years. The cool thing about working with students is that they take what they have learned and start their journey somewhere else. So I’m impacting even more people than I think.
I just returned from a second trip to UNC in a short time span. This time, I was able to combine a medical procedure and a speech. Both experiences are worth discussing. You might not know that Botox is not just a cosmetic procedure that some people use to look “more beautiful.” It’s actually a standard treatment for patients with CP. In fact, I started receiving the shots before it became popular as a cosmetic treatment. In case you don’t know what Botox does, it’s a neurotoxin which makes the muscles that are injected temporarily relax. That’s why people aren’t able to move their face.
I’ve blogged about my tight muscles before, so it probably makes sense to you that we decided to inject a small dose of Botox into my tight muscles. The benefit of doing this allows me to stretch my spastic muscles and strengthen the weaker ones. Does anyone else see the irony of injecting a neurotoxin, and in return experiencing a better quality of life? It’s not for everyone. I disagree with everyone that uses it on their face because it can potentially travel and you can incur long-term effects. I do it under strict medical supervision, and only because it’s necessary in my case.
Something else worth noting is that UNC is a teaching hospital, so I always have younger doctors working in tandem alongside my regular doctor. For the first time, one of my doctors has CP as well. It was invigorating to talk to her about health care policies based on our shared experience. In many ways, we are committed to the same goals but are going at it in different methods. I didn’t go there with the intention to talk about disability rights, but it just so happened that my intuitive nature allowed me to do so. Seeing a doctor with CP was another indication of progress, which fired me up for my presentation the next day at UNC. I expected a very different reception than what I received, in an excellent way. Since physical therapists work in the medical field, I felt they would subscribe to the medical model, which states that the medical professionals have all the answers and that disabilities need fixing. Instead, I found these group of future professionals committed to the social model, which sees society’s negative attitudes about disabilities as being responsible for adverse outcomes. The realization was significant for me because the disability rights community have been pushing this model for a very long time. To see a group of future health professionals already embracing it in their first few weeks of training might mean two things. First, the medical model might be on its way out sooner than I thought, along with the help of PTs. Secondly, advocates might have partners in PTs who might assist us in fighting for disability rights.
The future PTs and I have opened up a mutually beneficial conversation in which I answered all their great questions, and in exchange, I learned about a couple of health care options that I wasn’t aware of. I didn’t know that there were some personal trainers, who have certification to be with someone like me. This will be helpful when I use up my PT privilege for the year. In my opinion, health insurance doesn’t approve PT visits enough for people like me with chronic conditions. What has been happening since I became an adult, is that I get approved for a fixed number of visits a year. This number averages roughly a bi-weekly visit throughout the year. It’s hard to make much progress between visits, even though I have home exercises. Now that I know that I can go to the gym, and work with someone certified, I have more hope that I will be able to sustain my progress from the PT experience.
The last two weekends reminded me that the more I give, the more I receive. Although I didn’t receive any financial awards for my speeches, I’ve gotten some of the best dental and health care advice that anyone could ask for. In the past, I have been fixated on the fact I didn’t receive a paycheck for my hard work. My mom keeps saying that I’m getting paid in other ways, and she might be right on this one.
It was worth delaying my gratification while I roll…..