Here are the kinds of questions that people have asked me about or sometimes have not asked because they might think it’s not okay. Again, this is from my perspective. Others with disabilities will have different opinions. Just ask people what works best for them.
What do you do?
As a nineteen-year old man with a disability, I am advocating for more choices for the disability community. I’m a college student. I’m a public speaker about accessibility and my experiences living with a disability. I love to write my blog and other stuff. Other things I love – playing chess on my computer, reading, writing, watching political satire and That 70s Show.
What’s wrong with you?
Nothing is wrong with me. I’m not sick. You can’t catch it. I have kernicterus.
Kernicterus is the brain damage to the basal ganglia that happens because of severe newborn jaundice. For me it resulted in in athetoid cerebral palsy, auditory neuropathy, and visual difficulties.
Seriously? How could this happen?
When I was a newborn baby, I got severe newborn jaundice. The doctor and hospital never did a bilirubin test to see how severe my jaundice was. Instead they told my parents that it was no big deal and would go away in a week or two and to follow up with my doctor in two weeks.
My parents say that I was yellow down to my toes when we were discharged from the hospital when I was 2 days old. By the time I went in for my check up on day 10 of my life, my mom and dad thought I was looking much better. They were new parents – what did they know? The doctor did a bilirubin test and sent us home. A couple hours later, the doctor told my parents to bring me to the Neonatal Intensive Care Unit (NICU) for treatment. My bilirubin levels at this point were 29. Way too high for a 10-day baby. I was put under bilirubin lights for the weekend.
It took another 2 weeks before my bilirubin levels dropped to under 15. I most likely had an ABO incompatibility that caused my jaundice to become so bad. It was probably all too late, though. The damage had been done and when I was 4 months old, I was diagnosed with kernicterus. My mom helped me write this section.
Can kernicterus be prevented?
Yes! Easily preventable. Take a bilirubin test. Use the Bhutani Nomogram. Get treatment! NEXT QUESTION.
Are you angry that you have kernicterus?
No. It’s just something I have to deal with. I can’t go back in time and fix it. Bad things happen to people all the time. I do the things I love to do and focus on making the world a better place. I’m pretty positive about life.
What is athetoid cerebral palsy or CP?
Athetoid CP is like every one of your muscles having their own individual brains, none of which listen to your actual brain. Athetoid CP means uncontrolled and jerky movement and it affects every muscle in my body. My CP is more complicated so I need help with all my basic cares like feeding, giving me drinks, etc. I can drive my own power chair and type on my communication device. I also use an adaptive keyboard to type. My mom understands my voice well, so I can dictate to her and she types what I say really fast! The reason I have deep brain stimulation (DBS) is to try to calm the movement and make it a little easier to do what I want to do. See my blog post Faith in the Midst of Bewilderment to learn more about DBS.
What helps you do the things you want to do?
Technology. Technology. Technology. See my blog post Accessibility: What Works for Me about assistive technologies that help me to learn more about how I do what I do.
Why do you use a communication device?
The communication device IS my voice. It might sound like a computer to you, but it is how I share my thoughts and ideas to the world. My CP also affects all the muscles that I use to speak. People who hang out with me all the time or know me well understand my voice a lot of the time. But, for people who don’t, they can find it really hard to understand my voice. My communication device helps me share my ideas. It takes me a long time to type. Again, CP affects all my muscles. So, give me extra time to type out what I want to say because it takes me awhile to type. A lot of times, I have stuff I want to say programmed in so that I can say it quickly when it’s time.
What is auditory neuropathy (AN)?
Staticky radio for my hearing. Next question.
Is that why you have hearing aids?
Not really. Hearing aids amplify sound, and auditory neuropathy is an auditory processing issue. I hear, but the message gets all jumbled up by the time it gets to my brain. But, I also have high-frequency hearing loss (quiet voices, high pitched sounds are hard for me to hear). The hearing aids help me focus on what is being said. Because of the AN, though, my hearing still is like a staticky radio a lot of times. And then the hearing aids just make the static louder. Overall, it’s better with the hearing aids than without. Some kids with Kernicterus and AN get cochlear implants to help them hear. My AN wasn’t bad enough for that. Closed captioning and real-time captioning (CART) helps me better understand what is being said.
How do you want to be treated?
Like a normal human being. I used to say, like a normal kid, but I’m 19 now. I’m not a kid!
Talk to me, and not over me to my helper or parent. I understand what you’re saying, so don’t ask questions about me like I’m not there.
I don’t really care if you stare at me, but if you have questions, just ask.
Include me and others with disabilities in meaningful ways.
I’m working on captioning my video of my Hotdish Panel and will have that in my next blogpost. Also, started my Psychology class and studying a lot right now. Just living my life…