Tag Archives: disabled families

“Dignity is for everyone, everywhere, always”

It’s the summer holidays, so plenty of time for family trips! But what if you can’t go anywhere, because you won’t be able to use the loo?

Changing Places campaigns on behalf of disabled people who can’t use standard accessible toilets. They need changing places toilets which are publicly accessible with enough space and the right equipment, including a height adjustable changing bench and a hoist. Here Sarah, a campaigner for Changing Places explains why it’s so important. 

I’ve been a Changing Places campaigner for four years. I became involved in the campaign after taking a young woman with profound and multiple learning disabilities I supported on a flight, only to realise that there was nowhere to change her once we arrived at the airport. I am a learning disability nurse and fighting the corner for people with a learning disability is something I do every day. I find no other campaign more worthy of my time.

Changing Places are fighting for the most basic of rights, the right to use the toilet. That’s right, there are many people out there, who daily, are being denied this right. Over 250,000 people in the UK need a changing place. A changing place differs from a standard disabled toilet as they are publicly accessible with enough space and the right equipment, including a height adjustable changing bench and a hoist.

Two images, on showing a father with his disabled child lying on a mat on a toilet floor, and one with a mum helping her disabled child in a hoist in a much larger changing room
On the left, Alfie and his Dad having no choice but to use the toilet floor. On the right, Margaret and her daughter Julie use a changing place. Photos by Clos-o-mat. 

Karen says “it’s impossible to go out, because of the lack of changing places, my son is too heavy for me to lift even try changing him on a floor of a disabled toilet is impossible.”

Often without a changing place families and carers have no option but to change their loved ones wherever they can, and often this will be on a toilet floor.

Margaret, a Changing Places campaigner says, “It’s changed my daughter’s life and mine. She can’t stand or walk so can’t get onto a toilet. We had to lie her on wet, smelly, dirty toilet floors. At airports we had to change her on baby changing room floors, the immigration room floor and the prayer room floor. It was more than a mother could tolerate, so I made it my ambition to change things.”

Our request is simple. For larger businesses to join our cause and install a changing place. Often without a changing place families do not go somewhere simply because they cannot. Would you go out knowing the second you needed the toilet you would have to come back home?

A big bright clean changing places room with a hoist, changing bed, toilet and chairs
The changing places facilities at East Midlands airport. Photos by Clos-o-mat. 

Businesses are not just missing out on the quarter of a million people who need these facilities, but are also missing out on the support and custom of their families, friends and carers. As the Extra Costs Commission report recommends, businesses need to listen to and understand the needs of disabled consumers, and recognise the power of the purple pound. They might just find that they could reap the rewards.

I’ve been running the Facebook page behind Changing Places since 2011 voluntarily. We are a community of campaigners, families, carers and more importantly people who are in desperate need of these facilities themselves. We fight daily for dignity, accessibility, and equality, but I do wonder why in 2015 this is still a battle. Please join us in making the world a better place for the most vulnerable people in our society; dignity is for everyone, everywhere, always.

The UK has 750 changing places, and counting.

Have you had any similar experiences? Or have you used a changing place? How did you find it? 

My children and I have a condition that makes words move on the page – #100days100stories

Sinéad and her children have Irlen syndrome, a condition that affects the way the brain processes visual information. It’s a common condition – many people don’t realise they have it.  Sinéad has shared her story as part of our 100 days, 100 stories campaign

My two children and I have a condition that makes words move on the page. When I sit in front of a computer the screen seems to shakSinead, with dark hair and glassese in front of me. My son says the whole world is like a plate of wobbly jelly.

The most common name for this condition is Irlen syndrome but it also goes by Meares-Irlen syndrome, visual stress and scotopic sensitivity. It can exist as a condition by itself or alongside dyslexia.

Common difficulties include problems with reading and writing, over-sensitivity to light, problems differentiating between background and foreground in the environment, and a range of different physical effects caused by dealing with this, such as headaches, nausea, exhaustion.

Our experience of Irlen syndrome

My two children and myself all have Irlen symptoms. They affect us to different extents and in different ways.

My 10-year-old daughter finds the contrast between text and page the most difficult to manage.When she started using a coloured plastic sheet over the pages of her books, she went up three reading levels at school within a term. She also has coloured workbooks provided by the school, which she uses for her schoolwork.

Things that help upload

My eight-year-old son reads very well but likes to use a coloured sheet when there are harsh lighting conditions. He also finds writing on coloured workbooks much more comfortable.

The children respond differently to environmental conditions as well. My son says he has no problems with the class smartboard (a large interactive ‘board’ projected onto the wall of the classroom). However, he howls with pain if the general lighting conditions are too bright.

My daughter doesn’t seem to be too bothered by light, but he needs the background of the board changed so it isn’t white. This is easily done, and most of the children prefer the jollier colour.

I have terrible handwriting; not many people know this. I experience environmental symptoms the most – sensitivity to light, and movement in my vision between the foreground and background.

This means that for me, my tinted Irlen glasses provide the best relief. However, the lenses are a dark turquoise colour and I don’t like to use them too much in the office as my colleagues cannot see my eyes.glasses

On most occasions I actually use a green computer filter over my screen. This reduces headaches and makes it much easier for me to concentrate.

What can be done to help?

There are lots of adaptations that can be made, and many of them are free or readily available. For example:

  • Changing the background colour of the interactive whiteboard in the classroom
  • Using the minimum amount of artificial light in the classroom or workplace
  • Using computers and social media  to communicate instead of handwriting
  • Coloured or tinted exercise books, overlays, reading rulers and tinted wipe-boards

None of these adaptations are that expensive – many could be implemented in every school in the UK tomorrow at no additional cost.

Changing the background of the interactive whiteboard is as simple as changing the colour of a Word document. If budget allowed, they could even have a stack of coloured paper for the children who chose to use it.

I would ask every teacher parent, school governor, MP and councillor reading this article to go into your local school tomorrow and ask them to do at least two of these three things.

It’s likely to improve academic performance – and it could just save the school life of many undiagnosed children sitting and suffering in silence.

Have you experienced any of these symptoms yourself? Are there any other ideas you would recommend? Talk about it on Scope’s online community.

Find out more about 100 days, 100 stories, and read the rest of the stories so far. 

We want the boys to experience things together, as brothers should – #100days100stories

Martin is a big Manchester United fan, along with his three boys. His eldest son Jordan uses a wheelchair and attends one of Scope’s schools. Martin writes a blog called United Discriminates, and has shared his story as part of our 100 days, 100 stories campaign.

I’m father to three lads. Zac is four years old, Ethan is six, and Jordan is now 17. My eldest Jordan has a number of medical conditions, which means he has learning difficulties, suffers many seizures a day, and uses a wheelchair.  As a family we always try to do our best to make sure that Jordan and the boys get to experience things together, as brothers should.

Football with the boys

I’m a life-long Manchester United fan, and have recently managed to persuade the wife to allow me to take the boys to watch them play. Martin with two of his sons outside Manchester United football clubWe try to make it once a month. I bought memberships for myself and the youngest two. Before I bought the membership for Jordan, I contacted Manchester United, to see how it worked with wheelchair seating.

Manchester United won’t let us sit together

I was met by an email, that stated:

“There are facilities at Old Trafford that accommodate wheelchair supporters in attending matches. However, there is only one place at the side of the wheelchair place for a carer. All carers need to be 16 years of age and over.Therefore, in this case to attend at the same time there will be difficulties i.e. you won’t all be able to sit together.”

You can see that this was going to be an issue.  As I am but one man, and although I like to think of myself as “Superdad”, I can’t really sit in two places at once.  I emailed again and explained that sitting apart was not an option due to the age of the children.  What came next was somewhat gobsmacking to say the least:

“There are some clubs that would welcome you with open arms and possibly ask you to bring as many family members as possible… the downside is it wouldn’t be at Old Trafford, most probably Rochdale, Oldham or Stockport.” (Email from Manchester United’s Disability Liaison Officer)

I literally couldn’t believe what I was reading.  Is this email actually telling a fan to go and watch Rochdale, Oldham or Stockport?  And what made this so called “Liaison Officer” believe that he could say such a thing, to not only a fan, but a paying member, a supporter whose membership and ticket purchases pay for his wage. To say it got my back up is an understatement. And it resulted in a complaint to Manchester United Customer Care Manager, who replied:

“Regarding other clubs welcoming you with open arms, please beA logo saying 'United discriminate' assured that this was not meant to suggest you were not welcome here at Old Trafford. Instead, Phil was referring to the fact that the pressures on disabled and non-disabled ticketing allocations, are differing in comparison with other clubs where this may be less of an issue.”

It’ll cost us extra

The email went on to say the following:

“In line with stadium safety protocols we are regrettably unable to accommodate your request for you and your three children to all sit together as a family whilst watching a game. The alternative is still as previously outlined that you as the father and primary carer for your son to be situated on the wheelchair viewing  platform, and for your two other children to be accompanied by an adult in the seating area just to the front of the platform. You would be able to meet as a family before, during and after the game in the Ability Suite. As stated this would be subject to the availability of any unsold easy access seating, and the adult member caring for your children under 12 would have to be current members and have their tickets charged, which would be the standard procedure anywhere else in the stadium.  Many clubs are in a similar position and we are unable to meet your expectations at this time.” (Email from Manchester United’s Customer Care Manager)

So basically what I am understanding from all of this is that if my eldest son was not a wheelchair user, or had any medical conditions, as a father I could buy four memberships, buy four tickets, sit and watch the football altogether, and enjoy the thrill of a match as a family.

But as a direct action of my eldest son using a wheelchair, not only can my family not enjoy the football together, but we also have to buy an extra membership for another adult, and an additional adult match day ticket? And this email actually says that the reason for this is the stadium’s safety protocols.  So what safety issues are there with me watching the football with my family?

I won’t give up!

I intend on taking this all the way. Not sure where or how,  but I’m hoping that this blog will generate a few options. And I have now set my goal, to get Manchester United FC to change their seating layouts to allow families like mine to sit together.  As it won’t only affect me. A father who uses a wheelchair would also not be able to take his two children to the football, for example.

Banner saying 'Theatre of dreams, Old Trafford - our dream is to watch it togather'

Please spread this blog, far and wide.  If you are reading this because you, like me, have issues getting to sporting events because of disability and access, then I recommend an organisation called Level Playing Field.  They will help you.

Also please follow @utddiscriminate on Twitter.  It’s going to be a thorn in Manchester United’s side until they get their act together and sort out some of the issues they have with discriminating against disabled Man U fans.

Thanks for taking the time to read. I know it’s a rant. But change starts somewhere, and hopefully this is the start of that.

Have you had any similar experiences? We’d really like to hear from you. 

If you want to share your story as part of our 100 days, 100 stories campaign, contact us at stories@scope.org.uk

SENDirect: new portal will help families of disabled children find the right support

Mark Atkinson, Director of External Affairs here at Scope explains why SENDirect is so needed by families of disabled children. 

At Scope, we hear from many families who are struggling to find the right services and support for their disabled child in their local area.

Our research shows that a shocking two-fifths of parents have been unable to access youth clubs, play groups and other local activities for their disabled child.

Finding the right afterschool club, person assistant or childcare shouldn’t be a full time job – but parents tell us it is.

This week I attended the launch of SENDirect, which will revolutionise the way that families with disabled children access services and activities in their local area.

SENDirect is a one stop shop which aims to make it easy for families to:

  • See all the services in their local area, including how much they cost and what other families think about them.
  • Speak directly to activity providers about how they can include their child.

After the publication of the Support and Aspirations Green Paper in 2011, Scope has been proactively campaigning for councils to have inclusive and accessible universal services that all families can use.

Since the release of the paper, Scope has been a founding member of the SEND consortium and one of nine leading disability organisations working together to develop new products and services that meet the needs of families for SENDirect.

The timing of SENDirect is spot on. Last year the Government brought in a new requirement for councils to develop a ‘local offer’ of all the services and support for disabled children, and young people from birth to age 25.

When councils develop and review their ‘local offers’ they also have to consider the views of parents and young disabled people.

SENDirect puts families in the driving seat – and will help them shape the local market of services. If parents can’t find what they are looking for, the site automatically records the information and makes it available to commissioners or potential providers so they can develop new services.

So far 2,084 services are listed on the site and it’s growing every day.  I think it’s an exciting concept and we’re completely behind it.  Watch this space.

Are you longing for an accessible summer?

We all know January can be a miserable time of year. So much so that Monday 19 January is supposed to be THE most depressing day of the year! It helps explain why a lot of people start booking their summer holidays around this time. Here we have a couple of brilliant home and away options for accessible holiday destinations, reviewed by disabled people…

Somewhere cheerful on my doorstep please

Perhaps The Beamsley Project in the Yorkshire Dales will be right up your alley!

Emily Yates is an accessibility consultant and accessible travel writer, who also has cerebral palsy and uses a wheelchair. She’s currently spending six months of her year in Rio de Janeiro, advising on transport accessibility for the upcoming 2016 Olympic and Paralympic Games.

Emily spent her 21st birthday weekend at The Beamsley Project, and recently went back to properly assess all of the accessible features that it offers for disabled visitors.Large stone house in the countryside, with people sitting on a picnic table in front of it

Emily says, “in terms of accessibility, there are automatic external doors leading to a small lounge area with a television and sofas on the ground floor.  In the kitchen,  on the ground floor, there are height adjustable sinks and hobs, low storage for equipment that needs to be accessed, and all surfaces have space underneath so that wheelchair users can get right up to the surface itself. Off the side of the kitchen, the dining room boasts plenty of chairs and tables for personal arrangement, height adjustable tables, and wider grip cutlery for those who may require it. There’s a laundry room with two washers and dryers, a fridge freezer, torches and various sizes and shapes of slings to use with the hoists provided.

“There are also six bedrooms, two shower rooms, two toilet rooms and one bathroom on the ground floor, allowing sixteen people to sleep on this floor. Out of the sixteen beds (there are two four-bed rooms and four two-bed rooms on the ground floor), there are two height adjustable beds, and all beds can have cot-sides fitted to them if necessary.  There are two further bedrooms on the first floor (accessible via lift) sleeping four in each. Both have en suites, one of which has a roll-in shower and several grab rails.

“Whether you consider yourself to have a disability or not, book a stay at the Beamsley Project.  I guarantee that with such a stunning location, more equipment than you could need, and a great welcome from a lovely couple, you will not be disappointed.”

I want out of the UK –  give me guaranteed sunshine!

Then head to Barcelona, and experience sun, Catalan culture and tapas.

Martyn Sibley, co-editor of Disability Horizons, has a physical condition called Spinal Muscular Atrophy and uses an electric wheelchair. He visited Barcelona last summer to report on accessibility in the city.

It seems that Barcelona has really built on its Olympic and Paralympic legacy since hosting the games in 1992. Aside from the outstanding accessible accommodation available, there aYoung disabled man being supported into the basket of a hot air balloon re many other offerings which help to make Barcelona one of the most accessible cities in the world. Many experiences which disabled people are often completely excluded from, such as hot air balloon flights, lazy days swimming at the beach, and even visits to wine cellars can all be experienced here.

It’s not just physical impairments that have been taken into consideration either. There are a number of venues and sights that also cater for limited mobility and special needs, for example tactile and audio tours of Gaudi’s famous Temple of the Sagrada Familia, and tourist buses with audio guides and induction loops. Impressively, 80% of Barcelona’s metro system is accessible, and 100% of their buses.

Martyn says, “Barcelona is hands down, the most accessible European city that I’ve ever visited. With so much to see and do and so many facilities on offer to disabled people, I’m sure it won’t be long until I’m back to see some more of what Barcelona and Catalonia has to offer.”

We’d love to know any great accessible holiday destinations that you’ve experienced too. Please leave a comment if you have any recommendations.