Inside: Does your child have an invisible disability? Have you ever had to prove they were special needs “enough” to a stranger because they don’t look like they have a disability? Here’s how we can help our kids with their invisible disability in a positive way.
My daughter Addison is one of the millions of kids that has an “invisible disability.”
At first glance, and even at your tenth glance, you probably wouldn’t know that she has low vision and struggles to see the world around her.
She doesn’t use a white cane and she doesn’t have a guide dog and she doesn’t read braille.
But she still has the disability. Whether others around her know it or not. Whether others around her “believe” it or not.
RELATED: An Un-Apology to my Special Needs Child
Sadly, because of the infinite number of stories on social media, I know that many people who also have invisible disabilities are often called out and shamed for not being special needs “enough.”
There are admonishing letters written about using handicapped parking spaces, nasty words to parents about their kids’ “poor” behavior, and disrespectful comments thrown around in restaurants, offices, and movie theaters.
But by some miracle, my daughter hasn’t ever been exposed to this type of discrimination. Until last week.
The Day My Daughter’s Invisible Disability Wasn’t Special Needs “Enough”
We were at our family’s favorite theme park and we always use their special access pass given to people who need extra assistance.
But since our daughter’s rare disorder is invisible, she doesn’t look like she is different and needs accommodations.
So, each time we visit, we explain that our daughter has a rare genetic disorder to justify why she needs the extra assistance.
And then the pass is always handed over with a smile.
But not this time.
This time we encountered Justin. And Justin just didn’t get it. At all.
I had brought Addison up to the guest assistance counter with me because we actively teach her to self-advocate.
We empower her to ask for help when she needs it.
And we show her that it’s not only okay to accept help, it’s okay to ask for it.
But Justin, in all his 23 years of infinite wisdom, decided that since Addison was accompanied by able-bodied people, she shouldn’t receive additional assistance.
Oh, Justin. You just messed with the wrong Mama.
I smiled bravely in front of Addison and I re-explained that we get this assistance every time we come. I reasoned with him and asked for help again. He just repeated that he didn’t see how her needs would be helped by their services.
So I cussed at him.
In my head.
I told him what I thought of his smug, canned, non-compassionate little self.
In my head.
Because Addison was watching my every move.
I did the only thing I could do with my daughter still standing there with me.
I re-explained, reasoned and asked for help again. With a forced smile.
As Justin started his monologue again about how he couldn’t help us, I sent Addison away so I could speak freely.
Now I could tell Justin that he was discounting my daughter.
Discounting her genetic condition and her low vision.
Discounting her need for assistance.
And honestly, he was just pissing me off.
Because now Mama Bear had been poked too many times. Do not poke a Special Needs Mama Bear, Justin.
And as I stood there for an unreasonable amount of time trying to explain that not all disabilities are visible, something rare happened.
A super angry Papa Bear showed up to talk to Justin.
See, my husband rarely gets involved in things like this. He’s the “reasonable” one. And he brings me back to my calm place.
But not today.
Today he came to do battle for his daughter. He came to deal with Justin.
We requested to talk to Justin’s manager and then eventually his manager’s manager, each time retelling our story.
Our daughter’s story.
When our kids don’t look like they have a disability:
So we explained-again-how some disabilities are invisible and there should not be a requirement to prove she’s special needs “enough.”
No one should have to prove that they’re special needs enough to anyone.
It all worked out in the end. An hour later.
Of course your daughter can have the assistance she always gets. Of course we’re so sorry for the misunderstanding and the inconvenience.
We got what Addison needed to access the park, but as my husband and I walked away, we both felt sick to our stomachs.
My hands were shaking and I felt beaten down. It is such an intense response having to fight for your kid.
Because not only did Justin discount my daughter, he discounted me. Ignored me.
My words to explain why my daughter is more disabled than she looks was not good enough for him.
And who are you, Justin, to decide whether my daughter is special needs “enough?”
Instead of Justin making my job as a parent a little bit easier, I had to explain to my then eight-year-old that sometimes when you ask for help, you won’t get it.
Sometimes, people aren’t kind. Sometimes, people forget their manners. Sometimes, people aren’t empathetic towards others.
But it also taught our daughter something else: her parents will always be there for her.
We will stand up for her and speak up for her until she’s able to do it herself.
When Addison saw us fight for her and for what she needs, she stood up a little taller. Because we stood up a little taller.
And while I hope she won’t encounter many more Justins in the world, sadly I know she will.
That’s life.
But she now knows that when she does, she’ll have back up.
She’ll have us. Mama Bear, with Papa Bear close at her side.
And that’s a good lesson for any kid.
P.S. I still kinda hate Justin.
Does your child have an “invisible disability?”
Have you been asked to prove their disability to the world?
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Raina says
I love this… don’t get me wrong I hate that you had to go through it at all. My daughter is blind in one eye and I can foresee this happening at some point to us as well. Great job advocating for your little mama bear!
Nicole Black says
Our kids are so resilient, and a lot of their strength comes from us. A lot of our strength comes from them. And we just keep educating the Justins of the world, one person at a time!
Kirsty Russell says
I get this. My son also has low vision but he has so many compensatory tools that people think he is fine, but he’s not. Good on you for fighting for your girl and showing her how to advocate even when the answer is no!
Nicole Black says
My daughter is so good at compensating, I often forget sometimes until we go to an unfamiliar environment and she struggles! Thanks for the support!!
Laurie says
The Six Flags parks require a signed note from a doctor on letter head stationary stating you are disabiled according to ADA criteria. They record in their data base that you brought your letter in. So yes, amusement parks are forcing handicapped people to prove they are disabiled. What can be done about it?
Nicole Black says
I’m not sure… I haven’t taken her to a Six Flags park. I didn’t realize they required proof. :/
A Gendell says
Places are starting to require proof because a few rotten apples are taking advantage of programs they do not need. It sucks. I shouldn’t have to prove that my daughter is disabled “enough” to require extra accommodations. I live near a children’s amusement park and in previous yrs we simply had to walk in to guest services and request the accessibility pass. My daughter uses a wheelchair at times especially long outings so walking in with her in her chair meant no questions asked. But they also did not question if you simply walked in and said your kid was ASD or even adhd and unable to wait in lines. Parents took advantage of this and used it for typical kids as a way to “cut line”. Sooooo starting this year they are requiring proof of disability. It sucks!
Nicole Black says
I’m so sorry. It does suck. That’s why we all need to keep spreading awareness so the world’s empathy level increases! Glad we’re in it together!
Thalitha Chiara de Siqueira says
Good that you fight for your daughter. And good that you write about it. I am from Brazil and I now know your important history. Justin is a small person that needs prayers. I will pray for him. If he’s still in this job. And I will pray for you all, specially your beautiful daughter. She is special. Maybe are somethings in the world that don’t worth to see. Like the prejudice. God bless you.
Adrian says
I particularly noted how you focused solely on Justin and not on the park as a whole. A month ago, we visited this same park, and I had to explain my kids’ invisible disability to, in our case, Sonia (from Russia!) who was the most empathetic, gentle and understanding person we encountered on our trip. Two kids with the same invisible disability? No problem, let me help you guys out. I hope the Justins of the world learn a lesson or three from people like Sonia.
Nicole Black says
Most days we visit the park we encounter people like Sonia, which is fantastic. I wasn’t wanting to blame the park as a whole for Justin not having empathy/understanding. So glad you met Sonia!!!!
Ferowza Bowren says
I put a comment on the Facebook link to this, but gosh I have to say I nearly cried reading this. I have two small kids, girls. They don’t have special needs – none that I am aware of yet anyway, and I pray this remains so. They give me trouble, they make me exhausted, I spend so much of my money of them, but I love them to bits. And when I think of how tiring it is to be a parent my hat is tipped to parents of children with special needs – whether it be a physical or mental disability. How people can assume that every disability, every challenge a child has, needs to be displayed in an obvious physical form, is so primitive. People have heart conditions or hearing problems that you simply cannot see. You won’t even know driving past someone that they might have a prosthetic leg!
So kudos to mama bear, and papa bear, for fighting for your kid, and for showing so much strength that you did so while still being an example to your daughter. Next time mama bear, you punch Justin in his ignorant face. Your daughter (and none of us) will judge you! I kinda hate Justin too!
Nicole Black says
Thank you for your sweet words of encouragement. When we band together in empathy, there will be fewer Justins in the world.