Concerns about equal access for all might not affect you.
YET.
“The disabled”. The largest minority group of which any one of us can become a member of at any time.
It isn’t a club that many would wish to join.
There isn’t an eager queue.
Yet, once you are in, you are generally in for the long haul.
So, imagine for one moment that you are in the queue…
You can no longer stand up.
You can longer take even one solitary step. Your legs don’t support you. In fact, they cause you pain. Despite being unable to move them, they hurt. Sometimes people will try to move you but catch your toes on something. They don’t mean to but it doesn’t stop it from hurting. You felt the pain but you couldn’t move them out of the way.
Your arms are not strong and your fine motor skills are not as you would wish. You need help with everything, even getting out of bed.
You can no longer reach the sink to get yourself a drink. Oh yes, there is a team who will adapt things for you – eventually. You might only have to wait three years.
You can no longer get your wheelchair into the bathroom. Ah, there is a team who can look into that and come up with a plan to completely ruin your home make those alterations. In the meantime, you could always use a commode in your lounge. You recall that three years I mentioned earlier? (Some alterations are done sooner but three years of using the toilet in the lounge was our experience) Some take longer!
What do you mean this isn’t acceptable? The commode is provided for you and it is easy to get a bit of ceiling tracking installed in the middle of your lounge to hoist you onto it.
Of course, you will need a little extra help now that you need help with everything. Don’t bank on it! You will be expected to rely on friends and family first. So instead of feeling like an equal, you are now dependent on those you love.
You might be lucky enough to get a wheelchair which meets your postural needs and which is light enough for you to move. Or you might be lucky enough to have good friends and family who can fundraise for it. I hope you are.
How would you be feeling?
I imagine that you are feeling beaten down and low. Do you want to go out?
You can’t go in a friend’s car because you need to travel in your wheelchair.
Or you could get the bus.
Unless there is a buggy on board in which case you might be told that you can’t get on.
Or a taxi.
If you can get a company with an accessible car, or one which doesn’t just deny that they have one because it takes longer to load your wheelchair and they probably don’t know how to use the lockdown straps anyway.
Every aspect of life is hard. Even once you get adaptations to your own home it is likely that life indoors is still difficult. Regular homes are not really built with the space required by wheelchair users in mind.
You want to make the best of every moment. You want to live as well as you can. You are determined that physical disabilities are not going to stand in the way of living as best you can.
Just where will you go? Lunch and drinks? Hmmm, not really a good idea as there will not be a bathroom facility which you can use.
Family attraction for a day out? Well, for an hour or two maybe, until you need the toilet.
So many places have invested in level access entrances, wider doorways, accessible pathways and are keen to promote that they are accessible. Yet, if you can’t use the toilet there, it doesn’t matter how wide the doorways are or how level the pathways are. You can’t “go” there.
The things you ignore today, might just be your world tomorrow.
Sorry for sounding so miserable, but I let my son down.
I was ignorant about so many issues till a few years ago. These things were not supposed to happen to us.
My son was going to be fine. Everything would be okay.
But it isn’t.
YOU have time on your side.
Help me to implement change to make life less hard, BEFORE your future depends on it.
When you go out, check out what is behind that toilet door with a wheelchair logo on it.
If it doesn’t have a ceiling hoist and changing table, ask the manager if they are aware that many people are excluded without them.
Suggest they take a look at http://www.ordinaryhopes.com and maybe they will.
Ordinary Hopes 
Hi, I want to share this article in my Facebook page but I can’t find it in your website. Could you please send me the link? The one that came with tge article doesn’t work. By the way, good job!!!!!!! Blessings, Carmen
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If you try again, it might work now. It just allowed me to share it. Or you can find it on my Facebook page https://www.facebook.com/OrdinaryHopes/?fref=ts
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I can’t imagine how difficult this must make doing anything in life. It’s great that you are campaigning to get things improved and so sad that you have to do it at the same time!
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Thank you. Right now it is all feeling very hard. Another half term holiday is coming up, another week when other children can go pretty much anywhere.
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I just cant imagine how hard life must be for you guys . You can only do your best and it sounds like you are doing a fab job of getting the wors out there. #tribal love
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I have totally seen people and the world in a totally different light since my mum became dependant on a wheelchair when out and about.
In Glasgow i have seen people with prams and buggies being asked to get off a bus to let a wheelchair user board which is great but more awareness is needed definetly!
www sparklesatmidnight.com
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It is a world I knew nothing about till my son arrived and enlightened me.
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Oh that’s so awful 😦 I spent a year living and working with people with special needs, including one lady in a wheelchair. It really opened my eyes to how tough it is for the less abled and things need to change to make things equal for everyone.
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A few years ago my mum developed a condition which left her with no memory an also no use of her legs or one arm, our world changed. My mum gained her memories back, but was Wheelchair bound. You are so right that until we face these things we do not see them. We do not realise that there is a lack of transport help, or toilets, or even lifts. I am so sorry for what you are facing and let’s continue to get the word out. My mum has finally been given use of her limbs back and can now walk. She is not fully healed and now also has parkinson’s disease, but we were so blessed that for now she is getting around again! I wish you all the best xx
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Sorry forgot to mention I found your blog as I’m linked after you through #KCACOLS
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It is a great group!
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Thank you for your support. I wish your mum well too. Sounds like you have all had an incredibly tough time.x
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Thanks for this. It’s something I am increasingly mindful of and am often so shocked at the lack of provision for simple things like using the bathroom. It shouldn’t be this hard and adaptations shouldn’t take 3 years. Thanks for sharing! xx
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Each time I read your posts it really makes me sad your poor son (and you) have to suffer. To have to have used a commode in your living room for 3 years… How is that supposed to help your son build up his self confidence and not be self aware?! As always, I hope your persistence pays off… #KCACOLS
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Thank you. I think it was even worse for my older son as sometimes his friends would arrive shortly afterwards.
You can use making the odour. We also had to get other people to wait in the kitchen if people were visiting when he needed to go. Utterly horrible really. Yet this is the reality for so many.
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I can’t even imagine how this must feel. Sending you strength x
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I cant imagine how frustrating it must be to not have the facilities when you are out with your son. I am off to share your important message. x
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Thank you. Sharing it will really help.
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You really have no idea about this, until it is brought to your attention which is terrible. I’ve never even thought about this when visiting bathrooms or when going out and about. I will be spreading this around. Thank you for the information. I am so glad you are campaigning to make the world better and easier for your son and for other people. xx
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Thank you! It means a lot to know that people understand and care.
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This is really truly awful that you are made to wait so long to get things that others take for granted! There needs to be more awareness about this so families like you don’t have to suffer the way you are. After reading your last post I am much more aware now of the facilities provided!
Thanks so much for linking up at #KCACOLS. Hope you come back again next Sunday
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That’s the thing, we only become more aware once it happens to us. We’ll keep educating and sharing our stories and maybe one day there will be a bigger understanding of disabilities xx
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