When this is the best option you have.

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If you use social media you have probably seen a picture of a child with disabilities lying on a toilet floor.

I am sure that the mere sight of the pictures ignited strong feelings.

There are always many comments on these photos.

Most are from people who are horrified to learn that this happens. They hadn’t considered this before, but now they know, they hurt for these parents.

If you don’t live with these difficulties or know somebody who does, you cannot possibly be expected to know how awful things can be. There was a time when I didn’t know.

I wish I still lived in that time, with that blissful lack of knowledge of the horrors people face each day.

Then there are the hurtful comments. Maybe they come from “trolls” or maybe they just come from people who don’t understand. Somehow they blame the parent. They would never do this. They would have found a better way. Surely no loving parent would lie their child on the floor of a toilet?

Not unless that really was the best option open to them.

Surely most parents have had that horrible experience where your baby or toddler has had something completely unexpected and horribly explosive occur whilst sat in their pram? What did you do?

I am fairly sure that you did not leave them that way till you could get home.

No. Of course not. You are a good parent.

You spoke lovingly to your child. You reassured them. You gently (and very carefully) peeled off clothes and cleaned them up. You ensured that nothing could harm their skin and that no stranger would screw their face up with horror when passing within eight feet of your child.

You are a good parent.

So are these parents.

Quite often, they are parents who have lived with years of frustration and pain just to get to today. These are the parents who have argued with medical professionals, local councils, schools and therapists in order to get the best possible care and future in place for their child.

These are the parents who have agonised about every decision they have made for years, questioning whether they could have had a better outcome if only they had done some tiny thing differently.

These are the parents who have held their child down during invasive and terrifying medical procedures.

These are the parents who, all too frequently, have to hand their child over to surgeons and hope they are doing the right thing. They are still tormented by the look in their child’s eye when they have woken up from surgery in pain and with unimaginable terror.

These are the parents who cry inside every day because they are struggling to just get through this very minute and hopefully the next.

They are faced with the horrible realisation that they have nowhere safe and clean to put their child. Maybe they forgot to bring their big mat. Maybe they hurt themselves lifting their child at 3am when they were being sick. Maybe they have no idea how they are going to do this.

But all they know for sure is that they cannot leave their child sitting in this mess.

So they do the only thing they can.

They were holding back the tears as they reassured their child that Mum can do this. “Don’t worry sweetheart, it’s fine. Mummy can get this sorted out in no time. Don’t worry. Don’t cry my darling.”

There is no way to stop the crying in her heart though or the pain in her head.

Or  the pain in her back, neck, shoulder, wrist…

Because, believe me, when you have a disabled child, you have a broken body.

On days like this your spirit is broken too.

Can you imagine hauling your ten year old out of a wheelchair and bending down to lie them on the toilet floor? Do you even want to imagine that with your 15 year old?

Even worse, how on earth are you going to get them back up from the floor?

But she has no choice.

“Why did she take a photo and share it on social media?” I read that comment frequently.

She is desperate. She can’t change this world on her own. She needs helps. Would a couple of lines politely written to the shopping centre manager get the message across? Countless parents have tried. She has probably tried more times than she can remember.

She needs this situation to stop. Pleading to others to see her and help is all she has left. A picture really does paint a thousand words.

So don’t berate her. Don’t question her motives. She only has despair.

I totally appreciate that you don’t want to see photos of toilets and toilet floors. Believe me, it is an image that mother never wanted in her head in the first place.

You could scroll by.

Or you could help.

Share posts which try to raise awareness.

Tell her that you understand that typical facilities are below the necessary standard. Tell her you are sorry it is this way. Tell her you wish that she had never had to do this. Your words won’t change anything but she is already questioning whether she has done something awful. She is already punishing herself inside her own head.

Tell the service station/shopping centre/railway station/local attraction or whoever that this is not okay. Ask them to Google Space to Change and Changing Places toilets.

Sign petitions asking for change.

This one is to try to get these facilities included in law.

A passionate group of parents and carers at My Changing Place are asking people to write “Nobody should have to lie on a toilet floor” with “#Changing Places” on a sheet of paper and take a picture of yourself holding it.

No need to lie on the floor.

We don’t think that is okay either!

 

 

 

 

 

 

 

 

 

 

15 thoughts on “When this is the best option you have.

  1. Such a powerful piece! My heart is breaking for you and others in this situation!

    #brokenbody I can certainly relate to! And it’s so true! 💗

    Liked by 1 person

    1. Two simple pieces of equipment can change a facility from being a disabling toilet to an accessible toilet. It is heart-breaking.

      Like

  2. This is written so beautifully…I feel the pain frustration and anger at the limited choices presented to our children. I applaud the mothers who share these pictures because unfortunately this is the reality for many. Things have to change.

    Liked by 1 person

    1. They do. A man got in touch last year to say that he had barely left his home in ten years after having being embarrassed during a cinema trip because he had a bowel incident and no way of cleaning up till he got home.

      That should not be happening.

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  3. I have trouble getting my daughter to leave the house because of her incontinence issues. She is getting to the age now where ‘messing’ herself is really embarrassing. Thankfully I can clean her on a toilet or standing up. The problem is, I’m in a wheelchair myself so a little more room would be most appreciated. I think your campaigning is just what we need, this should not be the best option for anyone.

    Liked by 1 person

    1. Everyone deserves dignity. These facilities help a great number of people, not just those who need the hoist or bench. Thank you for your support.x

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  4. This is 2017 and everyone deserves dignity. This is a relatively small thing for huge companies to put in place and a huge thing for families who may require it. It means that families can go out and about without it being time limited to ensure the comfort of everyone. I don’t even like to put my handbag down on a toilet floor, how can anyone in 2017 think it’s appropriate in any way shape or form to ask there loved ones to do this. Come on Scotland be a trail blazer, get these facilities put in as many public and private places as possible. No one knows what the future may hold for them, it could be anyone of us.

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