The happiest place on earth is not as happy as happy as it used to be. When I was little, Disneyland was very understanding of my needs. So many people began abusing the policies that others began to react with people with disabilities with hostility. Disneyland changed their policy and now, not so happy or understanding.
This is even more so when you have an invisible disability. I can walk by myself for limited periods of time and I have no outward sign of disability except when my port catheter shows or I happen to be using oxygen at the time or sporting my overdose steroid look. Several times people insulted me and questioned me about why I was provided special services. My older sister Jocelyn turned on them and in her sarcastic schoolteacher voice gave them a lecture about invisible disabilities. Its too bad they weren’t the ones Alexis and my dad hit in the heels with my wheelchair as we ran through Disneyland.
Despite Jocelyn’s intervention, this has happened to me and continues to happen to me at Disneyland, other events and even when using a disabled person’s parking placard. It doesn’t help that when they finally see some outward sign of a disability with my oxygen backpack, the catheter or me struggling to get somewhere, they look guilty and walk away — the hurt and the pain has already been earned. Sometimes I even pretend to have a limp or look like Frankenstein’s Igor so that people see an outward sign and I am not given that look.
Now, instead of embarrassing myself, if they question me at all, I choose to educate them. Usually, I begin with “when you are born with only a partial heart, one working lung, and immune issues, the parking passing pass helps.” “But you don’t look sick . . ,” they say. I respond (in my head), ” and you don’t look stupid,” as its the more popular response from those of us in the You don’t look sick club!
I now realize that instead of me being shamed about something I had no control over, I decided to spread the word and teach others about invisible diseases. Surprisingly, the more open I am with others, the more people I realize have similar problems and feelings about their invisible diseases. I am beginning my lecture series on May 12 in Newport Beach to discuss issues dealing with complex diseases and the medical professions response to us.
Finally, just because we don’t look sick, it doesn’t mean we aren’t. We would give anything to park in the farthest part of the parking lot and not live with the Russian roulette of our daily health problems.