"Excuse me, do you perhaps have a disability discount?" Who said that? I look around, until I realise, hey, it was me. I can feel my cheeks beginning to glow bright red (yes, I know who Ron inherited his tendency to glow from). The shame creeping up, and I can't stop the words rushing out of my mouth "it's our youngest, he has a vision problem, he isn't really blind, I am sorry I asked, never mind". Once. I did it once at the apple store, and even though it has been a few weeks since, I still feel ashamed for it. I still feel as if I did something wrong.
Yon got his CVI (certificate of visual impairment) just before Christmas, and he is now officially disabled. The next step is his registration card from our local council, but it's just a formality really, because the CVI is what's important. It's where they state in nice large black letters that Yon is visually impaired, Which is the nice new name they gave to Partially Blind. Because we are always looking for nicer ways to call things so they will sound less severe, less scary. He has 40% vision, so he is only just above the limit of being legally blind. And when I say "just above" what I mean is one line in the eye-test. You know how you go to the eye doctor and you have this poster with all the letters? Yon can see about 3 or 4 lines from the top. Legally blind people can see 2.
I find I need to justify myself here, to explain how it wasn't for the benefits, how we've never even applied for child benefits. That we didn't even know we had any benefits to claim.
The reason we wanted the registration is because Yon's is an invisible disability. At least until you really look at him and start noticing all the little things, and then the bigger things. You would think he misbehaves, fearful, unfriendly, maybe even stupid and immature, if you know a little about special needs you would think "this child is on the spectrum for sure". You would look at us and think we baby him, or are too strict with him, or just plain bad parents. But unless you know what partially blind or albinism looks like, you will never think he doesn't see. And the saddest part of it is that even after you'll know the truth you won't remember it. Because "he doesn't look blind".
That piece of paper is our only way to prove to people, to teachers, to other parents, to ourselves, that as good as he is in deceiving and hiding it, he really doesn't see. That all those other things stem from that.
It was never intended for benefits, or discounts, or programs.
And there I was a few weeks ago at the Apple store asking about a disability discount.
And there I was today at the Arsenal website checking their disability membership.
Because when I take Yon to the movies I have to take him to the ones I know don't shut the lights completely, where he knows the place, where the loo is close, where I can get tickets in the middle row near the exit, where I can sit comfortably with him in my arms whispering "it's ok, it's ok" throughout the movie.
Because when I go with Yon to LegoLand I need to make sure there aren't too many people cramped together, I have to make sure I am allowed with him on all the rides, I have to make sure he doesn't have to wait too long in the queues.
Because wherever I take Yon I have to make sure it's stress free for him.
I didm't fill the forms. They are sitting next to me, staring at me, for the last few hours, and still I couldn't. Because these forms, in their language and their questions, make me feel like a fraud. They make me feel like every one of those stereotypes is true. They make me feel like I am using and abusing my son to get a discount that I don't deserve. They make me feel like a terrible person and a terrible mum.
I can't stop thinking how those seats are for "really disabled" people who deserve and need them, not people like us who use them to make their lives easier. I can't stop the questions from running around in my head. How can you do that? How can you trade on your child's disability? How can you fill a form that will get you access you won't have otherwise? How can you justify that to yourself?
But I really want to take him to a real football match and have him and us enjoy it, and I can't do that without those forms.