Boy with sign saying "No one should lie on a toilet floor!"

Fighting the 'Uphill Battle' for Larger Diaper Changing Tables in Public Restrooms

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Thousands of disabled children and adults in the U.K. have continence issues, and as a result of their disabilities, cannot use a toilet at all or require a hoist in order to do so. My son Brody can’t use a toilet and is still in diapers. At 4 years old he is far too big for a baby changing table. But what’s the alternative?

The toilet floor.

Our car boot (trunk).

Going home.

And sadly, we share this dilemma with thousands of other families.

I started campaigning for Changing Places and Space to Change toilets earlier this year, after starting a bigger diaper campaign. I wrote a blog about the issue, which was front page of Mumsnet Bloggers Network and blog of the day on Tots 100. It appeared on several sites and had thousands of shares on The Mighty. But I’m not telling you this to blow my own trumpet. Not in the slightest. Because trust me, the notes on that trumpet would be completely flat. It really made no difference.

For a brief moment, I naively thought that perhaps it would help sway some minds. Don’t get me wrong, I didn’t think a simple blog would change the world, but I had thought when starting out campaigning that surely it would be simple to change opinion and perhaps get this issue in the media. I mean this issue is huge and it’s 2016! Surely equality and accessibility is championed these days.
But I was so wrong.

I really don’t understand why this issue isn’t newsworthy.

It’s actually quite depressing how little the world seems to care about accessibility and accessible toilets. There are so many campaigners doing all that they can to encourage and promote Changing Places and Space to Change facilities. They write amazing blogs and articles, they contact businesses near and afar and they shout – constantly – from the rooftops of Facebook and Twitter. They are a collective force, but sadly for some reason it isn’t enough to get the movers and shakers to actually take notice.

Campaigners do all of the things you could imagine and more. From tweeting celebs who might be able to raise the profile on this issue, like Katie Price (sadly, she’s not listening), to starting petitions that attract thousands of signatures. You name it; they’ve no doubt tried it – at least once.

Every time there is a toilet-based issue in the news, campaigners jump on it. Recently, “This Morning” did a piece on whether or not it was acceptable for parents to allow their child to use a potty in a restaurant. Regardless of whether this is right or wrong, we took the opportunity to bombard the
comments section with why it is unacceptable for disabled children and adults to have no adequate toilet facilities. We do this kind of thing all the time but rarely get noticed. If we do, it’s no doubt by our Facebook friends who are unaffected by the issue and who quite possibly roll their eyes us while muttering “give it up!”

But we can’t give up. This is very much our reality, and we need the world to change. We do this for our loved ones because it’s an appalling position for them to be in, and some aren’t able to shout about the injustice of it all. As their parents and carers, you’d better believe we will fight for them – and for others too.

How is it OK for society to think that it’s acceptable for me to change Brody on a toilet floor covered in over 77,000 germs? Maybe some people agree that it isn’t, but it doesn’t affect them so they carry on with an “out of sight, out of mind” attitude. Maybe it’s because there is a (relatively small in the grand scheme of things) financial cost to my son’s needs and he isn’t worth that much to them.

Campaigning is an uphill battle and I am so grateful to everyone who takes the time to do it. To my campaigning friends – thank you. To everyone who campaigns – thank you. It’s so sad that this – a
basic human right and something people should be able to do with dignity – is something we actually have to fight for.

To help us campaign, you can sign this petition. You can share this blog or any other blogs you read about accessible disabled toilets. You can tell businesses about this problem and ask them to consider installing these facilities – there is never any harm in asking! Maybe you will make all the difference.

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” –Margaret Mead

This blog was originally written for and published by Firefly Community.

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What Does a Diagnosis 'Look Like'?

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One of these women  has been learning to ski, one enjoys bush walks, one loves sharing her photography, and one likes to spend time with her animals… which is which? Pretty easy?

Black and white photo featuring four different photos of the author

One of these women is married, one is a teacher, one emigrated at the age of 19, and one set up and runs a charity… which is which? Perhaps not so easy?

One of these women takes medication daily for anxiety, one sees a psychologist regularly, one is seen monthly by her general practitioner and nurse as she works to overcome an eating disorder, and one has a diagnosis of autism… which is which? You are not sure?

These women are me. They are one person.

What does autism look like? What does mental illness look like? The stereotypes of our society don’t recognize that difficulties and success, disability and ability, diversity and value go hand in hand. The potential for the future is sometimes forgotten with diagnosis. The validity of a diagnosis is sometimes questioned in the presence of achievement.

Challenge it — share your stories, and listen to the stories of others.

Know that there is no “look,” there are no “limits” and there is no “normal.”

“Take pride in how far you’ve come. Have faith in how far you can go.” — Michael Josephson

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19 Ways to Reduce the Shame and Stigma That Surrounds Invisible Disabilities

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Each year, people with invisible disabilities and their loved ones come together for Invisible Disabilities Week, a time to educate the general population about the challenges they face and the progress society still needs to make towards acceptance. It’s a time to break down the belief that people with invisible disabilities are “exaggerating” or “faking” their symptoms, and start a discussion about what inclusion really means. So this week, the community works to raise awareness of their invisible conditions and how their conditions affect their lives, as well as offer their recommendations for how to make the world a more inclusive place.

We partnered with the Invisible Disability Project to ask our communities what families, friends, employers, health professionals and educators can do to reduce the shame and stigma that surrounds invisible disabilities. By listening to these requests, people can help break down the barriers that affect the invisible disability community.

Here’s what they said:

1. “To start any conversations there must be people to listen… We have lost too many soldiers in this struggle trying to get a seat at the table in the discussion about our own lives.”

2. “I really wish people would respect us enough to ask, ‘What is your condition called? Do you mind telling me about it?’ Or research it! If you don’t know anything about my illness, asking and educating yourself is a lot better than jumping to assumptions or just tiptoeing around it.”

3. “Don’t actively give medical advice if we don’t ask for it. The practice of offering unsolicited advice implies we aren’t already doing all we can. It adds to the idea that we aren’t trying hard enough.”

4. “Others need to first try to understand and empathize. Too often people make assumptions about what you are and are not capable of doing, both positively and negatively identifying someone as less than or more capable than they are at any given time.”

hands holding across table with quote others need to first try to understand and empathize. too often people make assumptions

5. “Stop treating us like we have some kind of character flaw just because we don’t want to experience excruciating pain every single day. We didn’t choose our illness(es) and we don’t deserve judgment for doing whatever it takes to try to live a normal life that healthy people take for granted.”

6. “Don’t assume because we look fine that we are. We’ve gotten very good at not showing when we’re in pain — since that’s all day every day.”

7. “I wish family and friends would include me in activities. I do feel lonely and left out, like no one cares about what I care about, no one wants to even hear me talk or even know what it is I have to express.”

8. “A person who is using an aid for mobility whether it’s a cane, wheelchair, or scooter needs that device to function. The person may be able to stand or walk short distances, but that is her/his business, and no one should make a judgment about the level of that person’s disability.”

9. “The teachers and counselors in our schools need to be educated about invisible disabilities. They need to learn about the pain involved and not have stigmas about the medications that are involved. Also there needs to be understanding of the modifications involved with them. They need to create presentations that all schools need to see to educate the students and teachers.”

10. “Spread more awareness, especially [among] health officials and the government. Teach people that not everyone has to look like they are dying to have a serious illness. Teach people more about these illnesses, not just the ones that are common.”

11. “Listen to the symptoms. I mean really listen. Don’t judge based on clinical presentation. Use a different pain scale as people with chronic pain/illness tolerate a hell of a lot more then what healthy people do.”

12. “Health professionals need to be less afraid of re-educating themselves. I feel like it should be mandatory for physicians to take a course on chronic illness management every 10 years or so… medical professionals shouldn’t be intimidated when their patients know more about their own illness than they do, especially when it’s a rare disease.”

stethoscope with quote health professionals need to be less afraid of re-educating themselves

13. “For my son’s school staff: if you have questions, ask! I’m an open book, and have never been secretive about his struggles. The more people who are aware, the more help he can get!”

14. “Chronic illness patients are experts in their conditions. We need to be a team. Let’s take our unique perspectives and qualifications and work together, not against each other.”

15. “Understand that every single action or lack thereof requires extreme planning. Is there a restroom, will I have to stand, how far will I have to walk, how long will I be in pain if I participate, what medications do I need to bring?”

16. “The Social Security Disability system in the U.S. needs major updating and training from the policies to the employees. It’s humiliating and degrading to have x-rays, MRIs and CT scans plus doctors’ notes documenting your condition and all the meds you take and yet still have to beg for help from a system I’ve paid into nearly my whole life.”

17. “[Create] an environment where management takes the lead in respecting invisible disabilities equally to visible ones. I am blessed to work for employers whose owner will stack heavy boxes for me right next paid employees.”

18. “Think about who isn’t in the room and what they might need if they were. Don’t act like accommodations are an inconvenience.”

19. “Speak up and be an everyday advocate for people with invisible disabilities. For example, if you hear a friend criticize someone for using a wheelchair one day and walking the next, explain the variability of these disabilities from day to day.”

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To the Mom Who Dreads Getting a Wheelchair for Her Child

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I recently read your article about not feeling ready for your child to start using a wheelchair, and it brought back so many memories for me. I understand that many parents go through similar emotions when it’s time for their child’s first wheelchair. Mine did, too. But when I read your words, I was seeing them from a different perspective: that of your child. Of course, our experiences aren’t exactly the same, but I’m hoping by sharing what it was like for me to grow up using a wheelchair, I can help ease your mind.

I was born with cerebral palsy and have always had limited use of my arms and legs. I still remember being carried in a backpack on my dad’s back, which I loved, and being rolled around in a stroller past the age most kids use them, which I hated. The rest of the time, I crawled around on the floor. It was good for me, up to a point; kids spend lots of time on the floor, and it’s important for our bodies to change positions often. But I had no independent movement outside the house at an age when other children are jumping, climbing, and exploring, and I missed out on a lot.

I still remember getting my first wheelchair when I was 5 years old. It was so cute, with a red frame and olive green corduroy upholstery. I could tell my mom was sad on the day it arrived, although she tried to hide her feelings. But I was excited! I finally had a way to move around that wasn’t babyish like a stroller, and I could push it myself, at least sometimes.

In elementary school, my parents and teachers did everything they could to make sure I was included. My classmates would take turns helping push me to places like lunch or art class. I spent recess out on the playground with other kids, so I rarely felt left out. I didn’t feel sad about my wheelchair. It gave me freedom.

Karin at the Grand Canyon, age 14.
Karin at the Grand Canyon, age 14.

As I got older, that started to change. In middle school, I was bullied and felt increasingly socially excluded. I became acutely aware of the limitations of my wheelchair. I have little strength and coordination in my arms, so although I could push my wheelchair slowly on hard, flat surfaces, I couldn’t get up hills and even rolling on carpet was a struggle. I also couldn’t pop wheelies, so if I hit a large bump or threshold, my wheelchair would tip forward and I’d fall on my face. At an age when most girls enjoy shopping and spending time away from their parents, I couldn’t go anywhere independently.

My doctors and physical therapists started talking about me getting a power wheelchair, but my mother was vehemently against it. She believed I would lose physical ability if I didn’t have to wheel myself, and that I would be seen as “more disabled.” I bought into her views at first, but over time, I started to think about how my life would be different if I could have a power wheelchair. Finally, when I was 15, we had a terrible argument. I don’t remember what it was about anymore, but I remember her saying, “If you don’t do this, you’ll have to get a power wheelchair!”

I replied, “Good! I want one!”

She was taken aback. She had tried to use a power wheelchair as a threat, assuming I would view it as negative just like she did, but I had come to realize that a power wheelchair would be great for me. She didn’t understand how helpless and isolated I felt from my peers. She didn’t understand that the problem wasn’t my disability, it was that I didn’t have the right mobility equipment. But I knew. And when I said those words, everything changed.

A few weeks later, we went to test out power wheelchairs. I remember sitting in one for the first time and zooming around the parking lot, my service dog running by my side. I had used mobility scooters, but this was different. I felt like I was flying. I had never felt so free. I got a power wheelchair just like the first one I tested, and I’ve had one ever since. I’ve gone to college, traveled all over the USA, I have a great job and I love to spend time with friends. I wouldn’t have the life I enjoy today without a power wheelchair.

As my mother witnessed my newfound independence, her perspective shifted. She eventually came to enthusiastically support my life journey as a power wheelchair user. It was a key step in her own growth into fully embracing the idea that disability is just a different way of being. Our relationship, which had become fractured during my teen years, improved greatly.

There is nothing inherently bad about wheelchairs. We are the ones who put baggage on them. Yes, some are “medical-looking,” but that’s because they are not considered “cool” like a Hoverboard or Segway, so little effort is spent on their aesthetics. We can change that. If a wheelchair looks like something sad to you, make it happy. Paint it with your child’s favorite colors, or add fancy lights, or stickers from their favorite TV show. Some people name their wheelchairs — how do you feel sad when your child is racing their friends in the Screaming Yellow Zonker or sneaking up behind you in the Purple Ninjamobile?

For parents, watching a child take that first step is a joyful moment, but it’s also bittersweet. It means that soon you won’t be carrying them in your arms anymore. In a few years, they’ll go to school, and before you know it they’ll be adults and the years will have flown by so fast. Parents of kids with special needs don’t necessarily experience the same milestones, so sometimes they try to hold onto their kids’ younger stages longer, or see the different transitions in their lives as occasions to mourn. But it doesn’t have to be that way.

If we shift our perspective, watching a child take his or her first ride around in a wheelchair, learning how to push or drive it, can be the equivalent of taking their first steps. It’s a bittersweet moment, yes, but also an occasion to celebrate. It’s a time of newfound freedom and self-discovery for your child, a chance to have fun exploring all life has to offer. Even if your child can’t move themselves around with any available wheelchair technology, it will still give them more opportunities to see the world and interact with peers. A wheelchair is a source of joy, not sadness.

Using a wheelchair can improve your child’s positioning and health. Using a wheelchair, especially if you also get an accessible vehicle, can make “quick trips” easier. Using a wheelchair can  reduce back pain and exhaustion from lifting, so you can do more with your child and take care of your own body’s needs at the same time. And most importantly, a wheelchair in no way limits your ability to hold, snuggle, or carry your child whenever you want. Your child can and should still spend time out of the chair: playing on the floor, using other mobility equipment such as a stander, and cuddling on the couch. If your child starts walking soon, as you’re hoping, a wheelchair will still be useful for long distances and sick days.

A wheelchair is a mode of transportation, another resource you can use to make your child’s life better. It gives freedom and takes nothing away. Don’t fear the wheelchair.

I wish you the best with your parenting journey.

Follow this journey on Free Wheelin’.

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Disability Activists Sue Uber Over Lack of Wheelchair-Accessible Vechicles in Chicago

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Disability activists in Chicago are suing Uber over a lack of accessible Uber options in the city. The group claims Uber’s limited wheelchair-accessible vehicles violates the Americans with Disabilities Act (ADA).

In select cities, Uber offers an UberWAV (wheelchair-accessible vehicle) service which provides vehicles with ramps or lifts. According to the lawsuit, filed by Access Living of Metropolitan Chicago and several individuals, Uber provided only 14 rides to motorized wheelchair users in Chicago from 2011 to 2015. Fourteen rides in four years, compared to nearly 2 million rides in June 2015 for the company’s other vehicle services.

According to Access Living, in 2016, Uber campaigned against an amendment to Chicago’s rideshare ordinance that would have required 5 percent of Uber vehicles to be wheelchair-accessible. When the rideshare ordinance passed, it featured no accessibility amendment.

“Access Living had no choice but to take the significant action of litigation. People with disabilities have fought for generations to gain rights to equal services, ranging from mainline transit to taxis,” said Marca Bristo, President and CEO of Access Living. “This suit continues the struggle to enable individuals with disabilities to participate as full members of society. It is also a fight to avoid losing ground, as Uber pushes out existing accessible transportation services, further limiting options for people with disabilities.”

At the time of writing this story, only one UberCab (WAV) was available on the North Side of Chicago and required a 22-minute wait. UberCab (WAV) is not the same as UberWAV in other cities. UberWAV cars are wheelchair-accessible Uber vehicles; UberCab (WAV) are wheelchair-accessible cabs that can be hailed through the app.

Screenshot of Uber App

“Uber and Lyft provide over three million rides every month in Chicago because they are convenient, timely and cost-effective,” said Justin Cooper, who lives in the Lakeview neighborhood of Chicago, in a statement released by Access Living. “My wheelchair cannot transfer into a regular Uber vehicle, and even if I were lucky enough to find a wheelchair-accessible vehicle operating, I would have to wait for that vehicle to cross the city to reach me. No one would use Uber if the entire service worked this way.”

A spokesperson for Uber told The Mighty: “We take this issue seriously and are committed to increasing mobility and freedom for all riders and drivers, including those members of our communities who are disabled. There is always more to be done and we will continue working hard to expand access to affordable, reliable transportation options for all Chicagoans.”

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When an Old 'Friend' Posted a Derogatory Disability Meme on Facebook

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Words can be powerful. They can bring joy. One word can change someone’s day – life even. But with the same speed in which they can bring happiness, they can also cause hurt and damage – even when mindlessly spoken.

I was scrolling through my Facebook news feed recently when I came across an old school friend who had posted a derogatory meme of someone with Down syndrome, which had a comment supposedly meant to be funny. It had a few “likes” and some laughter emoticons in the comments box. I sat wondering how I should respond, while fighting the urge to throw some choice swear words around (I resisted).

It was Martin Luther King who said “Nothing in the world is more dangerous than sincere ignorance and conscientious stupidity.” He hit the nail on the head with that one.

A glutton for punishment, I clicked through to the page from which it was shared and it was full of memes mocking disabled adults and children. I reported it to Facebook, only to receive a report back telling me that it “doesn’t violate their community standards.” Really?

I am the first to admit that when I was growing up, I heard derogatory terms at school and I never gave them much thought. I later heard them in the workplace, too. And I didn’t really care. I was
oblivious. Naïve. Foolish. I didn’t think about the impact these words have. I didn’t think about their meaning. I’m ashamed to say I only really gave it thought when the offensive words affected me and someone I love more than life itself. My child.

Sadly, too many people don’t think about the words they are using. Sometimes they simply don’t care. Disability doesn’t affect them and they are just plain ignorant. Sometimes the words roll off of their tongue with no real thought as to who they are actually ridiculing. These people forget that disability can affect anybody at any time in their life. That tomorrow their mother, father, siblings or children could become disabled. That these words could turn around and hurt them.

We live in a world where an egotistical celebrity, in this case Kanye West, can release a single where he can be heard rapping “Then I heard you was talkin’ trash, hold me back I’m ‘bout to spaz” (Four Five Seconds with Paul McCartney and Rihanna).

Did radio stations or television channels ban Kanye’s song? Nope. Does society by large really even care? They probably didn’t even notice.

We live in a world where “Emmerdale” writers thought it wouldn’t cause any offense if one drunken character said to another “You can’t go around like that, all cocked. You look like you’ve got that, what is it? Himi, Hemi, Hemiplegia.” A brief moment of media attention ensued – unbelievably, one
newspaper even had a poll to check that this really was offensive – before an apology was issued from the program’s producers.

I am always unsure how to handle myself in situations where I’m faced with language intended to ridicule disability. Assuming I resist the urge to swear… Do I try to educate them? Do I just delete
them from my life or Facebook? Would they really care if I told them that these words offend me and make fun of people like my innocent, beautiful child?

It especially stings when it is someone who knows our situation, and therefore should at the very least have the common sense to think before using the words in front of me. But they don’t. I’m then met with “but I don’t think about Brody when I say it” or “but Brody isn’t like that.”  Because they don’t see the disability, they see Brody. Just as they should.

And therein lies the truth. People are people. This is just how every disabled person should be viewed – as themselves. People are not defined by their disabilities. And they shouldn’t be ridiculed for them.

This blog was written for and first published by Firefly Community.
Follow this journey on Brody, Me & GDD.

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