Handicapped Parking with PH
Dealing with the Challenges of an Invisible Illness
As if having pulmonary hypertension were not challenging enough, some PHers find themselves in situations where they feel harassed for utilizing handicapped parking spaces. It can be shocking, embarrassing and downright upsetting to be confronted by the cruelty of someone's judgment and misunderstanding when they assume that because they can't see anything physically wrong with you, you must be abusing the system. For those who use these spots, it can make going about their regular routine truly demoralizing. Two community members share their experiences with these parking challenges and how they handled the situation.
Tarya Laviolette from Vancouver, B.C., diagnosed two years ago at age 31 with idiopathic PAH, encountered a problem when she was out with her husband one day. "The moment I stepped out of my car, an angry gentleman asked if I had a pass to park there. My husband told him we do and that he was welcome to see for himself. Apparently, the pass wasn't good enough; the man insisted that 'if you're handicapped, you should be handicapped!' I guess I didn't look sick enough for him. My husband got a little angry about it, but I was armed with little PH information cards designed by PHA Canada for just this kind of situation. I was actually a little excited for the opportunity to break one out! I handed him a card, explained that I have a rare disease that makes walking up hills extremely difficult, and told him to have a nice day. He tried to give the card back to me, but I insisted he keep it. As we were walking away, I looked back and saw him reading the card. Success!"
If you want to use information cards like Tarya did, PHA offers wallet cards in the free materials section of our online store (www.PHAssociation.org/Store).
Stacey Gausling, who has lived with PAH for eight years, explains the advice she would have given to her newly diagnosed self about these parking challenges, "There will be people who judge me and mistake me for someone who is healthy. They may say mean things and may put notes on my car making themselves the self-ordained parking lot police. I would tell myself that the individual person does not matter and that I have three choices: #1 Get very upset and make my symptoms worse, #2 Ignore the situation completely, or #3 Be proactive by having educational materials on hand, ready to hand out or place on my car. Many of us have done #1 and #2, but #3, though it may take some extra preparation, can be worth the effort."
Stacey created an informational flier to make others aware of PH. As she explains, "It can be placed on your car window to educate the healthy parkers as well as the mobility-affected parkers about PH and PHA." She hopes with a little education, people will become more aware of hidden illnesses. "So, instead of being reluctant to employ your rights to park in a handicapped space, I hope you will consider becoming a hiddenillness PH ambassador and do something good for yourself that will educate others. Keep calm and park on!" Stacey's flier is available to download for free from PHA's store (www.PHAssociation.org/Store).
As PHA's resource book Pulmonary Hypertension: A Patient's Survival Guide advises, "Wear your PH pin or ribbon; instead of scowling, strangers might ask you what the pin or ribbon is for. Put a PHA sticker in your car window by the permit. One PH support group had bumper stickers printed with "Short of breath? Ask about pulmonary hypertension" on them. Another support group obtained custom-made license plate holders. If someone actually questions your right to use the slot, hand him or her a PHA brochure or a wallet card. Better to shrug off the nasty looks - you know you're doing nothing wrong. Also remember you can be more independent if you accept a little help when you need it, like parking in a handicapped slot or using an electric cart in grocery stores.
Above all, do not abuse the parking privilege yourself. Not everyone with PH is disabled all of the time. On your good days, let others in need have that close-in spot, so those with heavy oxygen tanks or wheelchairs can get around more easily."
Find more great tips and get your copy of the Survival Guide today at www.PHAssociation.org/SurvivalGuide.
By Marissa Barnes, Former PHA Patient & Caregiver Services Intern
This article was first published in Pathlight Fall 2014.