By 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.