This won’t be a long post but it is something that has been popping into my head constantly since it happened yesterday
So as a family we had enjoyed a day out at a wonderful seaside resort.. celebrating the 80th birthday of my amazing grandma. Going out with a child can be hard work.. going out with one who has a disability can be much much harder. The amount of planning and packing involved is considerable. I knew we were making the trip over a week ago and I had been worrying about it pretty much constantly since the plans were made.
I realise this might sound irrational but there is so much to think about. How will we get there? Should we drive? Should we get the train? Would she be able to handle the train? Does it have good wheelchair access on the trains and at the stations? Will she be okay with a two hour journey or will this cause a meltdown? And so on.
In the end we decided it would be best for all if we got the train. The train there was fine. It was the train back that is still causing me anger and grief. We’ve had numerous train journeys in the last year with varying success. We’ve had times where lifts weren’t working at stations and we’ve carried the wheelchair up many flights of steps, we’ve had journeys where people look disapprovingly at our daughter’s need for an ipad. I am somewhere in between shouting at these people, explaining why it is necessary and that we aren’t just lazy, and saying nothing. These days I opt for the latter and silently bubble with rage within.
We were getting the train home after an actually very successful and happy day when the train conductor began to urge everyone further down the platform. He was looking right at us wondering why we hadn’t budged. We shouted over “We need this wheelchair carriage”
To which a lady in the crowd retorts “don’t we all?”
I can only assume she thought our daughter’s wheelchair was a pram and not a wheelchair. Well lady.. you would be hard put to try and get one of these bad boys in mothercare! £2400 worth of biomechanically engineered, posturally supportive, heavy bit of kit provided by the local wheelchair services. My daughter has severe quadriplegic cerebral palsy… in fact if she had looked closer she would have seen that we actually have a feeding pump and a big tube routed alongside the wheelchair. We also have several bags for we must take numerous outfit changes, many electronic toys, spare feeding buttons, lots of medications and all sorts of things that you would probably not even consider when planning the average day out.
The lady in question had two perfectly able bodied children. I’m not saying she hasn’t had a challenging day. But what I am saying is why can’t people think before they speak?
She probably doesn’t even remember shouting that out to us but me being the emotional anxious wreck that I am… I am dwelling on it a lot. I didn’t let it spoil my day but it did make my blood boil.
Luckily thanks to the wonders of the internet and social networking.. invisible disabilities and much more are getting the awareness they deserve. For all she knew it could be myself with a chronic illness. My mum actually suffers various chronic illnesses and some days they are debilitating for her.. other days she copes like she did this day. To look at her you would think her to be just like everyone else but the truth is she can be in a lot of pain. She will smile through it and put on a brave face… but you haven’t seen behind closed doors. Just how you haven’t with our life.
We have seen our child go to surgery, we have seen her have seizures, we have had to learn to tube feed, we attend weekly physio, we have a while set of processes in place to ensure she doesn’t get curvature of the spine (scoliosis) or hip displacement which could result in agonising surgery. She most likely does not have that for her child. If our situation were not a challenging one we would not have been awarded a blue badge so that we can park so we have space to assemble the wheelchair. To that lady – have you ever had to do any of these things?
Our daughter does not need sympathy… she has an amazing quality of life, she is a happy and bright girl. Her physical limitations do not define her as a person but we do ask that people respect that some people do need a little extra space or access. Accessibility is an unnecessary hindrance as is people’s bad attitudes. She does not judge you, so don’t you judge us.
The man at the station was so kind and understanding. He helped us onto the carriage, he offered us the wheelchair ramp, he helped a man using a wheelchair onto the train. He was a credit to the company and the antithesis of this vile woman whose thoughtless remark cost me my good mood. The wheelchair carriage enabled us to have the space needed to ensure our child was safe and happy. We aren’t just lazy parents. We don’t take advantage or lie. We are playing the cards we were dealt and accessing the community just how EVERY person should. Show some respect.
Think people. Think!
I should also mention that on this same day we encountered many individuals who were enamored with our little girl and were so lovely and kind to us. Unfortunately though, those people don’t always get a post dedicated to them. I will write a post some time about the lovely people I meet. Also – This blog is intended to be about any topic… I know i have done a few posts about my daughter now, but I just write about what I feel like at that moment.
(The picture I included is taken from this particular day out where we took my grandma to see “illuminasia”… our daughter absolutely loved it too)