Why do the majority of disabled toilets have no facilities for disabled children?

Guest post from Darren Phelps, who has a 3-year-old son with Cerebral Palsy. Darren has been lobbying major supermarket chains about their disabled toilets only being set up for adults.

When out and about with my son, who cannot take himself to the toilet without help , we have always struggled. Disabled toilets are rarely equipped for children. We have to hover our son over the toilet as he is unable to sit on his own because of his disability. He goes very tense and struggles to go to the toilet and my partner is finding it harder to lift him as he grows.

I started my campaign by lobbying the “big four” supermarkets -asking why they ignore the needs of disabled children. I contacted all of them with simple suggestions on how to improve their toilets without costing a fortune. My suggestions were:

  • A simple step that would make it easier so that a child could be high enough to be able to balance with help and a boy to go for a wee.
  • A removable seat (most parents of a disabled child will have these at home) that would help most parents whose children have problems standing even with assistance.

Two out of the four supermarkets responded with the standard “we will raise this issue next time we look at our disabled toilet structure” – no timescale or agreement that it’s an issue. I’m still waiting for one to respond.

Tesco really surprised me, they took the time to ring me and listen to the problem. They agreed that this is a major issue and thanked me for bringing it to there attention. They also said they will implement my suggestions in my local store and they will also log it as a nationwide problem and roll out the changes nationwide! Let’s hope they stick to their word.

I now plan on taking my fight for disabled children further – lobbying government to force changes into how disabled toilets should be set up and that they actually cater for children as well!

My family and the extra costs of disability: #100days100stories

Virginia from London first shared her story with us in September 2014. We’re republishing it here as part of Scope’s 100 Days, 100 Stories campaign. Virginia has asked for her name to be changed, as she is worried that speaking out will affect her son’s care package.

My 12-year-old son Kyle has Down’s syndrome, autism and global development delays. He’s a very funny, happy, nice smiling young man, but he doesn’t communicate verbally and needs a lot of extra support.

I am also disabled – I have functional movement disorder and a spinal injury and use a wheelchair or mobility scooter most of the time.

The things you don’t think about

There are a lot of problems that people don’t realise exist when you’re disabled or have a child with special needs, and some of them are costly.

Kyle has incontinence and feeding issues, so we’re washing his clothes 10 times more than we would normally. The washing machine and the dryer are going nonstop because he constantly needs spare clothes, and the bill goes up and up.

Kyle wears nappies which are provided for free, but we go through so many each day that often they run out and we have to buy more. Sometimes we have to reuse them; we just can’t afford any more. He damages a lot of clothes – he folds his legs under him so he tends to rip nice ones at the crotch – so we’re always buying new ones. I would get them adapted by a tailor, but we can’t afford to.

I can’t wash Kyle’s hair any more because of my spinal injury and his dad’s out seven days a week working, so the only way we can get his hair washed is to go to the hairdresser. Again, it’s for a price.

The extra costs have meant we couldn’t buy Kyle many of the things that would have helped his development. I would have loved to buy him special sensory toys as he got older, but that was out of the question. We had to buy toys for babies instead.

The costs we pay add up to hundreds of pounds a month, and if we could afford to get Kyle  everything he needs for his development, it would be hundreds more.

My extra costs

My local council wouldn’t give me a mobility scooter because in order to qualify you have to need it inside the house. I can get about on crutches but there’s no way I could manage outside, so I had to go out and buy my own. It was £650 second-hand. I could lie and say I need it indoors, but why should I do that?

There’s not as much financial support when you’re disabled as many people would assume. There are a lot of criteria you have to fit, and if you don’t fit those criteria, you’re stuck. Even when one of my crutches broke, the hospital told me to buy a new one off the internet.

If I could just get an electric wheelchair I could save everyone a lot of time and money, and be more independent, but it’s not likely to happen because I don’t fit the criteria. Ironically, I could probably get council funding for a carer to push me, but not for a wheelchair!

My husband and I worry all the time. The nappies run out and it’s a panic – how are we going to afford to pay? Do I get out a credit card? We’re trying not to get into more financial difficulty than we’re already in. It’s not an easy way to live.

The Extra Costs Commission wants to find out more about the types of extra costs disabled people face.  Take the survey for a chance to win £100 in Amazon vouchers. 

Lack of representation of disability in the fashion industry

Guest post from Chelsey Jay – model and ambassador for Models With A Disability.

People often say to me –

“Chelsey, what is the hardest part of being disabled?”

They imagine me to answer with what you may think is the obvious – how hard it was to give up my career, or how hard it was to have to leave my house behind and move into a bungalow and a whirlwind of ramps and wide doors.

But in fact, even though these things did cause significant heartbreak and anguish, the hardest part of becoming disabled, for me, was the fact that, at age 20, not only was a wheelchair thrust upon me, but so was a sudden eternity of exclusion.

It wasn’t just my mobility that I lost back in November 2012, but unbeknown to me, my significance as an individual would be stripped away too. Not through my own choice or decision. But by those that believe a disability is you and not just a part of you.

The Fashion Industry is a powerful, powerful industry.

It instructs us on what we should/shouldn’t be wearing that season, the latest era to be revisiting, whom from an array of famous faces we should be inspired by, what staples we all need in our closets, but most of all, and by far most important of all, it gives every single person who follows it, the vital sense of belonging.

That is however, unless you are disabled.

Through Models Of Diversity, a Campaigning Group that contacted me almost a year ago, I now am the Ambassador For Models With A Disability and I strive to change the aforementioned.

I will not have the fact that I essentially ‘stay sitting down’ stop me from being reflected in mainstream media – and on the larger scale, I am fighting for all the other 11million disabled people in the UK too. Not for special treatment, but the same treatment.

We may have missing limbs, or suffer with debilitating conditions, due to circumstance or just purely our bodies own choosing, but to have that as our definition! I don’t think so!

I challenge the Fashion Industry to include and not exclude people with disabilities and to realise that they are orchestrating an old fashioned and out dated version of ‘reality’. People want what I like to call the Next Generation Models, people that are not perfect but are an actual illustration of real life! This ‘out of sight, out of mind’ illusion that the Fashion Industry projects on to us, where no disabled people are represented, is just utterly preposterous and an awful, a somewhat bitter reflection of times past when black people were shunned from the world as though they too, did not exist.

In a bewildering puzzle of blame – the industry manages to get away with this clear discrimination. Brands that I pled with blame the Modeling Agencies for not supplying Disabled Models to castings, the Agencies blame the Brands for their non-existent demand for Disabled Models in the first place.

Fundamentally. They all need to be held accountable as they are all to blame.

Along this journey we are gaining incredible support, not just here in the UK but across the pond! LA Talk Radio favourites Dr Estelle Snider and John Johnson, modeling elite such as the likes of Christie Brinkley and other ends of the spectrum, that being, Members Of Parliament such as the Minister For Disabled People Kate Green – we really are gaining incredible momentum.

If the Fashion Industry is so concerned with Disabled People’s ability to model then they seriously need to wake up! Disabled people are attractive too – who knew!

Even though I too am struck with the industries banish, I am taking the power back, and not just for myself, but every other person forced to hide, in the shadow of their disability.

Visit Chelsey’s website and follow her on Twitter.