Tell me that I matter.

“Just put me in the bin!”

Those are the most awful words I have ever heard from my child and those words are really why I am trying to make the world a better place.

Adam was almost six years old and had already spent over a month in a cast from his chest to his ankles, with legs spread far apart and a wooden bar between them.


He had no independence.

He couldn’t roll, he couldn’t sit up, he could not sit in his wheelchair and had no independence.

thPeople tried to make it better.

Our physiotherapy team hired a Chunc Spica Chair so that we could move him around but, to Adam, it was on oversized pushchair and he still couldn’t move it himself.

I had never realised  that a child could feel so low.

 

Adam struggled a lot with speech back then. He still struggles to explain his emotions. Yet he really couldn’t have said how he felt any more clearly.

After several weeks like this, he was so sad all the time and on this day he just spat the words out at me.

“Just put me in the bin!”

Life was holding very little value for him at that time. He didn’t know how much longer this ordeal was going to last.

The weeks must have felt like forever to him. Having every last shred of his independence taken from him just took too much. My child was sad. I would go so far as to say he was depressed. I never knew that such a young child could feel so low.

It took a year to get him back to good emotional health.

Four years on, he is almost 10 years old and there is a brand new shadow threatening his emotional wellbeing.

A shadow which really doesn’t have an end point.

A shadow over which I have no control.

How would you feel about yourself if you were the only person in your group who couldn’t do something? What if that thing was something as simple as using the toilet?

Would your heart break if you couldn’t have a day trip to the zoo with your friends because you couldn’t stay all day?

Would your heart break if you had to leave a restaurant before you finished your main course, just because you needed the toilet?

Would your heart break if you couldn’t just arrange to join your friends for bowling and a meal because you knew it would end in up with you needing the toilet and having to leave?

Would your heart break if you couldn’t go to the theatre because there was no toilet you could use?

Would your heart break if you couldn’t go on a shopping trip for the whole afternoon, let alone a whole day, simply because you would need the toilet?

What would happen to your heart if you explained these difficulties to your local cinema, theatre, theme park or shopping centre and the only response was that their toilets met the minimum standard required by law?

How much would you love yourself and value yourself now? Does anyone think you are worth anything?

How much worse would it hurt if this was your child?



MINIMUM STANDARD REQUIRED BY LAW.

Does anyone shout out with pride because they have met the minimum standard required?

“Yay, our school meets the minimum standard to be allowed to stay open!”

“Yes! Our restaurant is a bit grubby and we have lots to improve but we meet the minimum standards to be allowed to serve food!”

“Hooray! Crack open the wine, we meet the minimum standards required for ensuring that our ship can sail.”

No.

Nobody strives to “just” meet a basic minimum standard.


So if you receive an e-mail from me (or from anyone else) asking about your toilet facilities, please don’t see it as “picking on you”. Don’t see it as people being awkward or difficult.

See it as an opportunity to help make the world better.

See it as a way to help keep a person going.

See it as the right thing to do.

The Equality Act states that reasonable adjustments must be made before a person is disadvantaged due to disability.

Two simple things. A hoist and an adult sized changing bench raise your standards so much and make it possible for people to live full lives.

I can’t think of a much greater disadvantage than to be unable to do the most basic of things simply due to a lack of accessible facilities.

Don’t let things stay the same.

Don’t let people feel that they are worthless.

No person should want to throw themselves away.


Please CLICK HERE to sign a petition for these facilities to become a legal requirement in large buildings.

 

 

 

 

16 thoughts on “Tell me that I matter.

  1. So Heartbreaking to read, I can’t imagine how he feels when it gets so low, I’ve been totally dependant once in my life, but only for 2 years before my life was given back, albeit so different to what it was, and its a time I will never forget. It spurs me on passionately to make this necessary change apparent to EVERYONE as soon as possible and effect some changes for the better for disabled people especially children. You write so emotively Rachel, I fight back emotions as I read your posts.. I feel like I want to get together with some engineers and see if something couldn’t be designed and made to fit the van which could become the hoist he needs and lift Adam when necessary. There has to be a way around all this bull until the world wakes up and makes it happen.. Also I think I’m going to have to polish up on levitation skills fast .. 😉 seriously though there has to be something we can do! they say nothings impossible if you want it that badly.. well I’m sure you are not alone in wanting this that badly I want some changes and answers and I’m not stopping until we get them.. Adam YOU are very worth it!

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  2. It is unreal that in these times we still are so discriminatory to our disabled. Apauling. If a company were to make such adjustments, they’d be benefiting many families, in a massive way…. That should be enough if a reason but if they need more, in return we would be using their business!

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    1. Most of the tourist attractions in Cornwall are impossible for us to go to for a whole day. We do love The Eden Project but there really is a limit to the frequency a child wants to go there. This Ordinary Boy wants to do the same things every other child wants to do. It should not be so difficult.x

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  3. This just broke my heart! No one should ever feel that low… its truly so sad! The problem is that some business’ and people just don’t care enough and thats why they are failing to see outside the box, and that is a huge huge shame! Its almost as if people ignore things because they don’t effect them personally.. its selfish and really unfair! I truly hope its not going to always be like this. #bloggerclubuk

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    1. It really is horrendous. I have an open letter on here “Make it so, Hall for Cornwall, make it so” which is directed at my local theatre. They have a planned refurbishment costing £18.3 million yet they will not commit to installing a fully accessible toilet with a changing bench and ceiling hoist. Appalling attitude from something which I have supported since it opened.

      Thanks for showing me that you care. It means a lot.x

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      1. wow, thats shocking!! 18.3 million pounds and they can’t commit to this request? the world is an ugly place at times! Keep fighting, maybe, just maybe they’ll think again… I truly wish it didn’t have to be so exhausting to get people to do whats right.. good luck to you! let us know how you get on please, or if there is anything we can do to help x

        Liked by 1 person

  4. Oh this is terrible, no body should ever feel so low. Espically when there’s a way to fix it! It makes me realise just how much we take for granted every day. I hope you manage to get places to listen and provide the facilitates required so that we don’t continue to discriminate against our disabled. Thank you for sharing with us at #Bloggerclubuk. Hope to see you again this week x

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    1. It is a terrible situation and is faced by too many.

      We took part in some filming last week for No Go Britain and meeting the presenter and listening to him has made me even more determined to change things.

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  5. have you thought of using an Urisheath and a legbag – eliminates the need for an adapted toilet (as long as you do not need the other thing. Gave my son his independence when he was at University

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