An Invisible Medical Condition and a Handicap Placard

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MeganandEmmaBy Megan Williams
Dallas Forth Worth Community Network Leader

I share this for my hydrocephalus family – those biologically related and those who’s love and support bonds us just as tightly.

Tonight was the first time I had to advocate for my daughter to a complete stranger and I feel like I failed miserably on the first attempt. We were going out to eat and we parked in a handicap spot. My husband, Ryan, and I got out of the car and grabbed Emma to go inside. A gentlemen in his fifties was standing there after his wife dropped him and his daughter off at the door and was watching us very closely. As we walked by he asked, “So which one of you two is handicapped?”

This has been a fear of mine ever since Emma’s pediatrician gave me the placard for her a couple years ago. I knew people would look at me carrying her and think, ‘why does she get to park there when she is clearly fine.’ I knew most wouldn’t notice I was carrying an adorable 5 year old or think that it could have anything to do with her.

So when he spoke, I felt anger rush over me. I responded, “actually, our daughter is.” He then said, “well she’s not driving. My wife just had her hip replaced and we wanted to get her one, but they wouldn’t give it to her. It’s painful for her to walk.” I tried to control my emotions and simply replied, “no she isn’t driving, but she can’t walk.” We didn’t have her wheelchair with us so I knew that her disability was not something he could probably see. I hoped that my response would make it clear and I could get away for the situation and calm down so I could enjoy my meal with my family. But it didn’t. He responded, “I carried my kids all the time when they were little, it’s not a big deal.”

At this point, my anger was getting the best of me and Ryan stepped in and asked him to just mind his own business. We walked in and were seated at a table. The gentlemen, his wife, and their daughter were seated not far from us and I couldn’t let it go. So I decided to make an effort to make the situation better.

For my second attempt, I went over to their table and apologized for my response earlier. I explained it is hard for us when people question our daughter’s disability just because they can’t see it. He still didn’t seem to understand that Emma’s life is far different from that of a person like his wife who lives without a medical condition and had a surgery they can recover from. His wife thanked me for coming over and they all wished us a good evening. But I didn’t feel like my effort impacted the gentlemen the way I hoped it would.

I returned to the table feeling defeated where my wonderful husband was feeding Emma and sat down. I told him what transpired and how I felt like I still didn’t make a difference. Then he told me how proud of me he was that I made the effort.

I now realize that it doesn’t matter if the gentleman ever understands the difference. What matters is that I advocated for our daughter despite my desire to runaway and hide from the situation. So I can happily go to bed tonight knowing that I will do better next time, and will even work on raising awareness by trying to explain how life with hydrocephalus is a battle we fight every moment of every day that no one can see.

For access to hydrocephalus quick fact sheets, click here.

For local community and support, find your local Community Network here.

For more information or to get involved with hydrocephalus advocacy, click here.

12 Comments for : An Invisible Medical Condition and a Handicap Placard
    • Denny
    • May 6, 2019
    Reply

    I’m in my 60’s. After multiple knee and shoulder surgeries and current treatment by a physical therapist as well as open heart surgery on a valve and multiple bypasses, my own sister who is 70, accusingly asked as I pulled into a restaurant, why I had a handicap placard when I walk every day for excersise. I was truly floored. I have had a stranger say something rude before, but my own sister? I tried to stay calm and explain that some days are better than others. My legs may hurt very bad, then let up for a bit. My shoulder has been so painful at times, its unexplainable. I can’t carry groceries or walk very far when these things happen. My point is, just because you don’t see a wheel chair bound person, it doesn’t mean you are qualified to diagnose a patient. You are not the doctor and they look at your physical history. Doctors don’t just hand out handicap forms for no reason. At least my doctors don’t. Keep this in mind when you see people parking in these spaces. Thank you.

    • Joseph J. Pangia
    • May 1, 2016
    Reply

    I had a similar situation. I suffered a catastrophic knee injury (college football 1967). I received little corrective treatment. The result is intensive pain, on standing, walking, carrying any weight, a lack of balance, etc. A member of my Church challenged me, bitterly, recently, asserting that I was not “handicapped enough” in her medical opinion (NOT A PHYSICIAN) . I regret that I did not respond as graciously as the mother in this anecdote did.

    • Susan
    • April 15, 2016
    Reply

    I feel your frustration, my son and I had a similar experience , I was caring him into Target one day and a man walked by and said under his breath, “It must be nice to be able to park in Handicap”, I LOST IT!!!! By that time my son had already had about 20 some revision’s by the age of 2 years old, I went a little crazy on the man!!!! So I just wanted to say you did GOOD!!! People just don’t understand!

    • Kaela
    • April 14, 2016
    Reply

    Thank you for sharing.

    • Cary
    • April 14, 2016
    Reply

    My sister has microcephalus, she’s a spastic quadriplegic, blind with cerebral palsy and cognitive impairments. We have run into similar situations. We use a specially equipped minivan to transport my sister. The ramp deploys from the passenger side. We pulled in to van accessible handicapped spot with the added space for a ramp or lift. Before I could unfasten my sister’s chair from the tie downs, two motorcycles parked in the space meant for the ramp / lift to use. I called out to the two guys (who still had their helmets on but, they kept walking. An employee saw what happened and made an announcement over the store’s public address system. The bikers never answered the call. I ended up backing out of the spot and deploying the lift in the middle of the “roadway”. Then I had to leave my sister in the “roadway” and pull the van into the parking spot. The bikers didn’t leave until they were finished shopping. I called the police non-emergency number and asked if they could do something and they said if I didn’t work for the store I couldn’t report a parking violation. I almost the same thing happen at a restaurant. I even had people at church use the no parking area next to the handicapped spot used as parking spot for their small cars. People don’t understand van accessible handicapped spots really are there for vans. I did ask a police office about cars and motorcycles parking in a handicapped spot and the officer said that as long as the have a handicapped placard they can park in any parking spot.

    • Linda
    • April 14, 2016
    Reply

    Great story.
    That’s why I am pushing for a fundraiser and more awareness.

    • CYNTHIA
    • April 13, 2016
    Reply

    HELLO, MY BAD ENGLISH FORGIVENESS OF ARGENTINA AM . MY DAUGHTER HAS FOUR YEARS OLD , HYDROCEPHALUS CONGENITA , SHE WALKS , HAS ITS LARGEST HEAD , FACIAL PARALYSIS LEFT SIDE . SHE HAS YOUR CARD DISABILITY ALSO FACED AS THOSE MOMENTS . OR THAT LOOK GOOD THAT HAS NOT KNOWING . ONE DAY A CHILD IN THE BUS TOLD HIS MOTHER : MOM WHAT HAPPENS TO HER? A MOTHER IS THE ANSWER NOT LOOK NOTHING CALLATE . I BREATHE UND and approached the child and SIMPLY TO EXPLAIN HIS CONDITION HYDROCEPHALUS . CHILD ANSWERED : HAS BUT CAN PLAY !! With a beautiful smile . It is difficult, but UNTIL SHE CAN NOT EXPLAIN THAT IS , ME, I’LL DO YOUR MOM FOR IT .

    • Virginia
    • April 13, 2016
    Reply

    My heart breaks that you had to deal with such ignorance. He should have definitely apologized and with his ignorance, he could have paid for your meal. God bless you and your family and many hugs to your daughter. I, too have hydrocephalus. I was diagnosed in 1985 when I was 13. I have had numerous revisions and replacement. Again God Bless you and your family.

    • Steve
    • April 13, 2016
    Reply

    What was the gentleman’s disability? Why was he standing there while his recuperating wife went to park the car?

    • Joseph
    • April 13, 2016
    Reply

    My “disability” shows up when I walk with a slight limp… It really shows up when I am applying for a job… After the in person interview. I become invisible.

    • Shana fedorka
    • April 13, 2016
    Reply

    This story brings tears to my eyes I am 38 and have hydrophelaus since birth and I often deal with people like this that don’t understand that just because I can walk and talk that I am not dealing with the pain and obstacles that come with this condition people need to have more compassion we are all trying to live with this the best we can people should just live and let live hope your daughter is doing well

    • Tess
    • April 13, 2016
    Reply

    I know how hard it can be but hang in there! I require extra assistance within the university I attend and once had a professor much like the man you described. He questioned why I needed help even though it was against the law for him to do that. You are not alone.

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