This post is a little impromptu change of plans. I was going to post about a news video I saw recently, but I’m moving that post out a while because I’ve realized that a lot of my posts thus far have focused on the “visible” aspects of disability.
I use mobility aides. I have physical characteristics (like a lazy eye, a foot that turns inward and a weird gait) that make it obvious I have a disability. People can see those things, so if I say, “I need an accessible bathroom,” “No, I can’t stand that long or walk up that flight of stairs,” or “I have a visual perception problem,” I usually don’t have to justify my statements or provide additional proof.
I say “usually” because I have had conversations/arguments about accommodation and whether or not I actually need certain accommodations or medical equipment (Including my wheelchair. Yes, I’m serious.) Generally, though, those discussions happen with social service providers, school officials, business owners, or medical professionals. The average person doesn’t bat an eyelash about the idea that a person with cerebral palsy might need mobility devices or accommodations.
When it comes to anything that is less obvious or visible, like a chronic health condition or migraine headaches, it’s often another story. I’m posting an excerpt of a facebook chat I had with family members about whether or not I would be traveling to attend out of state family events that are coming up. You might be tempted to think that these experiences are unique to me or unusual, but they’re quite common to many people who live with “hidden” disabilities and chronic health problems.
I’m editing for spelling and typos, removing or changing some details, and changing my real name to “Rose” but the pertinent conversation is the same.
Family member: How can I get you to Grandma’s surprise party next month?. [detailed discussion.]
Me: I’m sorry, I can’t be in a car for more than 45 minutes at most. My legs swell and I get migraines really bad. There’s no way I can make a trip like that.
Family member: We are coming up to see you soon. [detailed discussion.] I want you to be at my wedding.
Me: I’d be glad to see you, but unless you’re planning to get married in Nashua, I really can’t come. Congratulations though.
Family Member: Why cant you travel?
Me: I get really bad migraines that last about 7-9 days once they start. Being in the car tends to trigger them because of motion sickness and glare. My legs swell if I’m sitting in a car for long periods of time. I also have stomach, bladder, and bowel problems.
Family member: I never knew that, sweety.
Me: I’ve had migraines/cluster headaches since I was about 13, but they’ve gotten a lot worse in the last 8 years or so. Stomach problems started when I was 17 and go on and off different periods. Gets bad for a while, then better, but I’ve always gotten motion sick even when I was a kid. When we came to Long Island, I always had to drive the whole with the window open otherwise I would get sick.
Family Member: I will talk to you tomorrow got work at 8 am. But you’re making excuses not to try. That’s not my Rose that proved she could walk. Night.
Me: I’m not making excuses. I am in pain every day, and migraines are excruciating. I love you, and I respect you, but that’s rude, and unfair. Please don’t talk to me like that.
Whether or not I “proved that I walk” has nothing to do with whether or not I can make long road trips. I happen to love road trips, and before my chronic health problems developed to this extent, I used to travel every year. I’ve seen every state on the East Coast, and I’ve been to Canada. I miss doing that, and I miss my out-of-state family, especially my grandparents.
It should be enough for me to say “I’m sorry, I can’t go.” That should be enough for anyone in any circumstance, but especially for a person with pre-existing health problems.
There’s a prevailing attitude that any health problem or disability can be overcome with enough effort and determination. The end goal — in this case, getting to my family events — is the only thing that matters. There’s no thought for the quality of experience that the person with a disability or even other family members are going to have and whether the ultimate goal is worth the suffering and sustained effort involved.
I’ve said before that there’s nothing wrong with wanting to improve your physical or mental health. There’s nothing wrong with wanting a “cure” or trying to “overcome” a disability if that’s what’s important to you. The reality is that certain things just don’t work that way. No amount of effort is going to make it possible for me to travel multiple days by car, and I doubt that a plane trip would be feasible either.
I’ve also heard other family members say things like, “We would stop the car for you to throw up.”
Imagine stopping the car for me to throw up twice or three times an hour. Then imagine me struggling to get out of the car with swollen legs while I’m throwing up AND my bladder or bowels have chosen this moment to let go — which happens a lot because I have spastic cerebral palsy, overactive bladder syndrome,and a host of GI problems.
Keep in mind that I have chronic tendinitis in my arms now, so I will most likely need another person to help me in and out of the car and offer me physical support while my various orifices are spewing bodily waste.
Add to that the intense pain of a headache episode that feels like someone has attached a vice to one side of my head and is repeatedly slamming a baseball bat into it while drilling into my eye with a power-tool.
While that’s going on, my hands, arms, and my face feel like they’re on fire, I can’t relax, my nose is running, one eye is tearing and impossible to keep open, and I may or may not be able to see through it.
Imagine that these symptoms ebb and peak cyclically over 72 hours, but the whole thing keeps coming and going for 7-9 days. (The last one went on for 21 days.)
If I was able to make the trip, I would probably be badly dehydrated, blind in one eye, and need to spend several hours getting treated in an emergency room.
Nobody would be having a good time, least of all me. I would have no positive contribution to make to my family celebrations — I would be miserable and all I would really want is to go home where it would be quiet and I could rest. (Except that my home would be days away.)
It seems to be easier for people to understand and accept that something “visible” like cerebral palsy is a “disability,” but it’s much harder for anyone to grasp that chronic pain or “invisible” issues of any kind can also have serious, even debilitating, effects.
I’ve found little to no understanding of issues related to comorbid health problems and disability. What I mean by that is, if I just had cerebral palsy or even just cerebral palsy and an occasional problem with my bladder or bowels, I wouldn’t hesitate to make a cross-country trip to see my family. If I just had cerebral palsy, or even cerebral palsy and and chronic tendinitis, I wouldn’t mind asking for help getting in and out of the car. Unfortunately, I have cerebral palsy, chronic tendinitis, bladder and bowel problems, and two different types of severe headache all at the same time.
When a person has more than one disability, or a disability that is complicated by multiple factors, the challenges and issues involved in managing the disability become vastly more complex. Things that wouldn’t be deal-breakers or major issues by themselves become huge problems.
“Ability” isn’t static. People’s lives and abilities change over time.There are always adjustments and changes that need to be made. That’s something most people who are born with disabilities understand fairly early in life. It seems like part of the social construct we’re wrestling with here is the concept of “ableness” versus “disability” both as statiic phenomenon. People assume that their physical health and abilities are going to stay the same from their midteens all the way through to whatever age they think of as “elderly.” It really doesn’t work that way.
The fact that I learned to to walk even though doctors said I wouldn’t doesn’t automatically mean that I should be able to bulldoze every health problem that comes along. I am still the same person. My worth as a human being shouldn’t be dependent on whether or not I can defy medical odds or bear up under extreme pain in order to do things that other people are doing. I am a worthwhile human being and I have accomplished things with my life, whether or not I’ve heroically “overcome” my medical problems.
- Do you regularly attend family reunions or other family events?
- Under what circumstances would you stay home from one of those events?
- How would your absence be perceived by your family?