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“I wish I were handicapped”

Dear Ignorant Man,

Thank you for letting me know that you “wish you were handicapped so that you would be able to cut everyone in line at Disneyland.” I really appreciate you taking the time to inform us that we were walking in  the “exit and that we didn’t look handicapped” to you. My four year old and I minding our own business felt very privileged that you took the time out of your day to make ours better and set us “straight.”

If you would like, I’m happy to swap my child having had Infantile Spasms and consequently significant brain damage for your place in line. You let me know when you’d like to make that switch. I’d invite you to google Infantile Spasms and read at least one article and then go ahead let me know if my child “deserves” to “cut everyone in line.”

You see sir, my daughter doesn’t understand lines. She doesn’t know why we have to wait, she physically can’t wait without an extraordinary struggle. She loves Disney, but according to you she shouldn’t have “special treatment.” Again, if we have offended you in our special treatment I am so happy to switch places in line with you if you’ll also take her “handicap.”

Now I do understand that some may abuse Disney’s very gracious disability pass and that’s why it is so bloody tedious getting one each and every time you go to the park. Maybe those in line with 8 other people who appear to only have a temporary injury and chose to spend time with their entire family at Disney? I am sure that those who have cheated the system are the root of your frustration and your down right shameful attitude, but let me tell you that you can’t visibly see all disabilities. You can’t see Infantile Spasms. You can’t see cancer. You can’t see traumatic brain injury. Frankly most disabilities you can see, are often not as serious as those you can’t (of course not always). The woman in line with the cast. Is she disabled? Yes, of course, but she’s temporarily that way. Don’t judge my child and myself by how we look. Maybe we are cheats, or maybe we just want to enjoy a piece of the magic like everyone else. Did your wife cry at Disneyland? Did your kid lay on the floor in the stores because they couldn’t express their wants and needs? Did you get held to the side for shoplifting because your purchases had a sensor on them without your knowledge while your child yelled and pulled everything off the shelves? Did your child have an accident because they were unable to get to the bathroom in time? Did you drip sweat chasing your kid that much closer making sure they didn’t God forbid touched anyone else? Did you eat as fast as you could or not at all, so you could make sure your child didn’t knock over anyone else’s food? Did you feel the need to look at perfect strangers and justify things with “she has some special needs?” Did you cry a little every time you heard “oh” in response? Did you try with everything in your being to just be normal for a day? If you answered yes to all those things then sir I commend you. If you didn’t, I simply have one recommendation. THINK BEFORE YOU SPEAK.

Do I wish I spoke up and said something in the moment? No! I am happy that I picked myself and my child up and we hopped right on that Mater’s Junkyard ride. As we were whisked and whipped around in loops we let your negativity fly off us. Don’t pity us, pity yourself and your ignorance.

#teamailbe #onerantatatime

11 thoughts on ““I wish I were handicapped””

  2. Hi, I’m Megan, editor of TheMighty.com. We’re starting an epilepsy awareness initiative and I stumbled upon your blog when searching for influential writers in the community. We love this piece and I wanted to ask you if you’d like to have it republished on The Mighty. We link back to you of course! If you’re interested, can you shoot me an email at epilepsy@themighty.com? Hope to hear from you. Either way, thank you for sharing your story. All my best, Megan

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  3. I have a son with CP and I myself have a brain injury. I use a Service Dog and I hear all the time – “Wish I could take my dog with me everywhere I go.” – I love my dog but would much rather have no brain injury and have a pet. Some people display way tooooo much ignorance.

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  4. Our little “bubbs” Cooper is turning 4 this month. He was diagnosed with infantile spasms at 6 months old. He remains in the crypto genie category but I know that will change. It sounds like your little girl is the mirror image of Cooper. Oh the battle, the nights days hours minutes of gut wrenching worry. Cooper has significant delays , he is nonverbal, and I just don’t give a damn anymore either. I used to launch into a dissertation when people inquired that he doesn’t talk or rolled their eyes when he was running in and out of the automatic doors at Home Depot. He is obsessed with the automatic doors so sometimes we never get past them and I drive back to the grocery store alone later. You know what…the character and strength of babies that suffered from IS could bring that jerk to his knees!
    How are things with your family? So few people understand infantile spasms . I can’t explain it anymore I am exhausted….I always seem to end up in a conversation where I get advice on the uncle of a friend who dated someone with epilepsy and it’s fine it’s manageable…. Go fly around on all the rides of life with that sweet little girl…I will be doing the same with Cooper here in pittsburgh😊

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    1. My goodness what a welcome response! I would love to chat with you! Are you on Facebook? I’ve never met another mother who understands what this truly is like. I too have heard so many people share their “wisdom”. Xo

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      1. Yes!!! I would absolutely love to talk. Same here😊. I don’t know any one that’s gone through this either. Hence the insane frustration…please let’s talk. Julie Kandor

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      3. Hi me again… I was just reading the rest of your posts. You sound so much like me. We to have gone to the top experts in the country , I can speak infantile spasm language fluently too. From his first EEG with hypsarrhythmia , idiopathic, cryptogenic, vigabatrin, ACTH, west syndrome, jackknife seizures, etc etc… 3 years of putting my kids to bed and googling infantile spasms till 5 am…

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