Recently I have read alot of blog posts about those with ‘invisible disabilities’ feeling or experiencing that others not believing they actually have a disablitily. This can be when accessing a disabled loo or parking in blue badge even though they are fully entitled and have displayed a blue badge in their car. This is upsetting and so wrong. It did get me thinking about the ways people perceive those with either non visible and visible disabilities. Is there really much of a difference in the way you are treated?
In my own experience of having a son with severe physical disabilities and some disabilities that are not so visable we have our self experiences similar circumstances. It seems that even being in a wheelchair is not proof enough.
The Summer Holidays have shone a light on how much we as a family have to somehow prove my son is disabled
Constantly having to justify your disability be it ‘visible’ or ‘invisible’, be it a physical disability or a chronic illness in my eyes it is simply not on. It is just not nice and sometimes the way in it is done can feel degrading. I often wonder what the questioners must think? Do they seriously think I would lie that my child is disabled? Who would do that? I guess some people must do… Am I naive in thinking otherwise? there must be a real need for these constant checks. Although I still reckon far more people have disabilities than those who actually lie. So if that’s the case why ‘punish’ those that have.
Last time we used a Changing Place just saying he was disabled and needed to use one was not enough to gain entry. I constantly find myself going into my now well rehearsaled spill of diagnoses normally reserved for meeting new medical experts. I don’t think it is necessary to relay all this to ‘Fred’ in his office through the intercom. Then for ‘Fred’ to make a judgment whether you are worthy of entry. Popping to the toilet for everyone else is just plain easy but for others it is a full on mission. Firstly finding a Changing Places Toilet is near impossible with a little over a 1000 across the whole country. When you think you struck gold and found one the next mission is to gain entry. Hunting down a key, explaining to ‘Fred’ why your son needs Changing Places and no not the baby changers, can take 200x more effort. How is this equality. Yes I know many of you will say “Oh I rather they check then let any one in….” but checking can feel humiliating, your privacy truly invaded shouting out my son is doubly incontinent is just not nice at the age of 6, But what about when he reaches say 16 . I also wonder how an adult with a colostomy feels relaying this personal info over an intercom.
Maybe for the sake of fairness everyone should be scrutised to use every customer or public loo… Can you just imagine “Why do you need to use the loo madam” “Erm I really need a poo!!!!” See it just would not happen.
Owen is only 6 so at them moment he is in a ‘Snappi’ from Wheelchair services and I guess can be mistaken for a typical (large) buggy by some. Though his head support is a little bit of a give away.
On one of our days out there was a small peroid home to around my two younger girls wanted to go in, as did their Dad. We up to the door where two members of staff were dressed in period costume to greet everyone. My eldest and I wasn’t sure if we wanted to go in but I joined my Husband and walked up pushing Owen, My thoughts were to take a picture of the dressed up staff and the kids in front of the beautiful house. As we rolled up to the door, before we had chance to say hello we got told we was not allowed in with a buggy. I said it was a wheelchair not a buggy. The man insisted we could not come in due to the age of the House so buggies were not allowed in. I again told him it was a wheelchair and my son was disabled and therefore could not walk. The man and lady then told us in that case if O needed a wheelchair they had their own which we could use. but if we did need a wheelchair they had their own we can borrow. With Owen sitting comfortably in his own highly supported, especially adapted chair I started to get irritated. I started to explain that there own chair probably being a standard wheelchair would not be at all suitable for his needs. He would simply fall out. I could sense my girls wondering if again their mum was again going in ‘Warrior Mum Mode’ unfortunately they have witnessed this enough. After a few whispers they said if we could wait they would call their Manager. It was a hot day. I saw a nice shady garden next to the house, Owen would probably moan all the way round the house anyhow. So I suggested Alex went in with Lilly and Florence while me, Owen and Beth would look around the now even more appealing shady garden.
The garden was just as nice and pleasant as it seemed, we were again chilled.. That was until a lady started shouting at us. Not hearing what she was saying both mine and my eldest my first thought was maybe we was not allowed here.. or maybe not with a wheelchair… But she introduced as the manager and apologosed for the way her staff treated us, of course we were welcomed in the house they even had lifts we could use. She explained her staff had never seen “such a chair” pointed to it in such confusion like it was a spaceship. I thanked her but said as our family are probably half way round now we didn’t want to bother. I told her maybe her staff will learn from this and not to be so quick judge. I felt I had been accused that I was lying my son was in a wheelchair just so we didn’t have to get him out of a pushchair. In that moment it hurt.
As a family we do not want special treatment we just want fairness.
Maybe when my son is older, maybe his disabilities will be more obvious and less questions will be asked? OR maybe this is it, we will constantly have to prove worthy of assistance and accessibility. If that is the case than visable or non visable disability it does not matter the fight for true accessibility and full inclusion goes on and that fight really should be together.
I would love to hear your stories on the subject.