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Why 'Accessible' Public Bathrooms Often Aren't for Dads and Their Daughters

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My daughter, who has caudal regression syndrome, needs her wheelchair. She can walk short distances in her walker, but for most trips outside the house — grocery shopping, field trips, playdates, and so on — we have to bring her wheelchair. Unfortunately, more often than not, that also means dealing with bathrooms too small to accommodate it.

Accessible bathrooms are not all created equal.

First off, let’s talk about so-called accessible bathrooms. There is a wide, wide disparity between how they’re built and what people may need. Sometimes they’re wide, but not long. Sometimes they’re long, but not wide. Sometimes they’re wider than the other stall, but just not wide enough. Sometimes you luck out and find one that does have enough room all around, but the toilet paper roll is placed where you can’t reach it when you’re sitting on the toilet.

So you might be able to get a wheelchair in the stall, but there are plenty of times when you have a caregiver and a wheelchair-using person, like me and my daughter. More often than not, it’s difficult getting around the chair after having pushed it from behind, in order for her to transfer to the toilet. She’s fortunate that she has the upper body strength to do so. But what about caregivers who help people who can’t transfer to the toilet? And if there isn’t room for an adult, a small wheelchair, and a child, then how in the world can anyone expect two adults and an adult-sized wheelchair to fit?

For the time being, I can force my way through this problem because I can pick my daughter up. If there are no accessible stalls — or if said stall is just not big enough for the two of us, or if someone is using it — I can leave her wheelchair outside the stall and carry her inside. So far, I’ve never had to worry about people trying to steal her wheelchair.

But Namine won’t be a child forever. She’s already gotten too tall for her wheelchair (it’s been extended twice already), and there will come a time when she is on her own and unable to use the bathroom because they just don’t build all of them with more than a single subset of disabled people in mind.

Family bathrooms are awesome.

Imagine, for a moment, that instead of there being a male bathroom and a female bathroom, there are just two bathrooms. My daughter goes into one and finds all the stalls in use. So she goes into the other bathroom and finds an open stall. I’m failing to see a downside here.

This is precisely what family bathrooms are. Those are few and far between, though, and they’re just a single room, for the use of one family at a time. We need more of them!

I’ll admit that most dads probably don’t bring their daughters into public bathrooms at age 7. Under other circumstances, I’m sure the dad would send his daughter into the women’s room by herself. But even though she’s fully capable of transferring herself to and from her wheelchair and a toilet, the unpredictable state of bathroom stalls gives me pause. So most times, I still go into the bathroom with her. I, being the male adult, can’t go into the women’s bathroom, so she and I go into the men’s together.

There is much that can be improved when it comes to disability and bathrooms, both in terms of construction and attitude. But with more awareness, I believe we can make a more accessible future for our children.

This post was originally published on eichefam.net.

The Mighty is asking the following: Describe a moment where you experienced intolerance or inaccessibility. What needs to happen to change this? Check out our Submit a Story page for more about our submission guidelines.

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Disability Rights Aren't Just for the 'Lucky Ones’

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I’m a “lucky cripple.” I’m pretty, I can walk short distances on flat terrain and go up a flight of stairs with help. I received a huge amount of therapy and education growing up, thanks largely to the tireless effort of my parents. I can wear fashionable clothes, go out at a moment’s notice, and use the bathroom by myself. Most of my friends forget I’m disabled.

But I’m not a Paralympic Athlete, that shiny new form of disability that is almost enviable. They have spreads in fashion magazines, transfer onto couches to chat with talk show hosts, and get to open supermarkets. It’s seen as a great point of progress in our society that we are finally including disabled people in public, recognizing that some people need different things in order to be successful. So long as they “pass.”

By “passing,” I mean society views it as more OK to be disabled now, as long as you’re not “too disabled.” As long as you are inspirational / good looking / don’t need too much to fit into the rest of our lives, the world at least pays lip service to the idea that disabled people should have their basic human rights protected. But if you drool, if you don’t look good on camera, if we need to put in a lot of work and make a lot of changes to help you, then your needs can be negated.

Recently there’s been a double standard in what it means to be disabled. Increased acceptance is only available to some, so long as you fit into what society’s standards of with a person with a disability should be like. The rest of us are labeled benefit scroungers, invalids, burdens, or worse.

This has become very clear to me over the past seven months, which is how long I’ve been without my wheelchair. Last October I was on my way to interview a NASA scientist for my series when I was denied carriage on a British Airways flight out of London City Airport. When the staff returned my wheelchair, the chair’s computer was so badly damaged it was no longer safe to drive. When I asked for help, I was told by a British Airway representative that the situation “can’t be that bad.”

British Airways will fly the entire GB Paralympic Team to the Rio Games this year.

The problem is the corporation uses the fact that they sponsor Team GB as proof that they treat all people with disabilities well. Never mind that they’ve refused flights to people simply because they had Down syndrome, or that the US Department of Transportation fined the company last month for their treatment of passengers with disabilities. Never mind their guide dog tax for people who need to fly with assistance dogs, which no other airline has, or all the other people who have made contact with me over the past seven months who have also had their wheelchairs broken by British Airways.

Paralympic athletes are lucky in the same way I am lucky. A combination of what our disability left and what it took away us makes up who we are. If my cerebral palsy affected me cognitively, I probably wouldn’t be on a flight to interview a guy who works with NASA. I have the ability to write well, have my voice heard, and be noticed. These are skills I have honed from gifts I already had. But that doesn’t mean I deserve more human rights than someone who has other difficulties. There’s a word for parties who offer one set of standards to disabled people who manage to “pass” and then turn around and assume those who don’t are “benefit scroungers.” They’re called hypocrites.

Progress for one is not necessarily progress for all. For years I thought it was. I was wrong. Seeing a company give great service to Paralympic athletes and use it as proof that they treat people with disabilities well, while refusing to take responsibility for breaking my wheelchair, has taught me otherwise. It’s not how you treat the “lucky ones” that matters. It’s how you treat the most vulnerable, the most complicated, the scariest, when no one else is looking that determines your character.

A double standard towards people with disabilities isn’t progress. It is more prejudice, dressed up as advancement, something to be proud of, a public relations trick and political agendas. Nobody is served by double standards. Those of us who “pass” are whisked into an illusion where we falsely believe that the world is changing. Those of us who don’t “pass” continue to be held down by no fault of our own.

True change is slow and can only be measured through consistency and not double standards.

The Mighty is asking the following: Describe a moment where you experienced intolerance or inaccessibility. What needs to happen to change this? Check out our Submit a Story page for more about our submission guidelines.

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Doctor Creates Epic Wipes to Help Anyone Who Has Difficulty Bathing Independently

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From the battlefield to the bathroom, Dr. Aeneas Janze might have created the best product for anyone looking to get clean in a flash. Epic Wipes, Janze’s creation, are individually wrapped, disposable wipes that are 16 times larger than your average wipe.

The towel-sized wipes were inspired by Janze’s time as a doctor and soldier in Afghanistan. There were times when his comrades would have benefitted from being able to clean themselves, except there was no shower in sight.

But the battlefield isn’t the only place these wipes could come in handy. “Being a physical medicine and rehabilitation doctor it was also clear from the start that these wipes would be extremely useful in the hospital setting,” Janze told The Mighty. “People who are acutely ill can’t shower for obvious reasons and many people with chronic disabilities lack the mobility to shower without assistance which makes personal hygiene a real issue.”

Epic Wipes are made from bamboo, which makes them biodegradable as well as safe and environmentally sustainable. They are also a safe choice for people sensitive to chemicals as they are without parabens, phthalates, and triclosan – an antibacterial and antifungal found in many consumer products.

“I think the people that really stand to benefit the most from these wipes, from a medical perspective, are the folks with chronic disabilities or mobility issues,” Janze said.

“I think my grandmother is the perfect example,” he told The Mighty. “My grandmother recently became ill and doesn’t have the strength to safely bathe without assistance anymore. She is however strong enough to use these wipes on her own which has allowed her to maintain some of her independence and preserve her dignity.”

The wipes could benefit anyone who can’t bathe after surgery, people living with ostomies, parents of children with disabilities, and people with mobility issues who want to maintain their independence and bathe themselves, Janze added.

Epic Wipes are currently available for pre-order on Indiegogo. One box of 10 individually wrapped wipes costs $25.

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The Day I’ll Have to Tell My Son He Can’t Play Contact Sports

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After 12 surgeries, my son, Jaxson, will be 4 in July. This is the first summer he’s been truly healthy. There are no planned surgeries — just follow-up appointments and therapies.

Watching him grow as a person this spring and summer has been such a joy. When we go to the playground, he can climb and do many things on his own that he couldn’t do before. He’s been willing to try new things, and he’s asserting his independence like any 3-year-old would.

But there’s one thing about Jax that separates him from most other kids. Because he has a mechanical valve, he has to take a blood thinner for the rest of his life. We’re six months out of surgery, and he hasn’t yet maintained a therapeutic level. But that hasn’t hindered his growth and skyrocketing developmental skills. It also hasn’t stopped him from telling us he wants to play sports.

Jax loves to play catch, kick the ball around, dribble a basketball and spike a football for a touchdown. I’ve always got a game on in the evenings, whether it’s one of the four major sports or something else. I love sports, and Jaxson picked up on it.

When he gets older, I’ll have to have this conversation with him. I’ll have to tell him can’t play contact sports. If you are unfamiliar with blood thinners, any small cut can become life-threatening. His blood has to be thinner to keep it flowing through the mechanical valve, but that also means that any injury can be deadly.

For example, my dad also takes a blood thinner, and one year on Christmas Eve, he had to miss the service because he nicked himself shaving. It was a tiny little cut, but it had barely stopped bleeding when we got back nearly two hours later. Imagine a gash, a broken bone, a ball to the face, broken ribs or anything that can cause a more serious injury. It could turn any game into an emergency situation.

When Jax started the medication in December, I knew he’d never be able to play contact sports. He loves to play, rough-house and chase kids, but no doctor will ever release him medically to play a contact sport. And even if I found one, I’m not sure I’d allow him to play. No game is worth his life.

All of this has lead me to realize I need to figure out how to approach the conversation when it arises. Luckily, he’s still young, and it probably won’t happen for a few years at least. And he’s a smart kid, so I’m sure he’ll understand everything.

But that doesn’t make it any easier. And it’s not going to make accepting the look of disappointment on his face any easier, too.

Jax has a full and happy life ahead of him. He will require future surgeries to replace his valve, among other things, but he’s quickly catching up to his peers in many areas.

He brings light, life and laughter everywhere he goes. He’ll still be able to participate in non-contact sports like swimming should he decide to, but no matter what he chooses, he will give it all he’s got.

He’s a fighter and a survivor. And one day, he will share it with the world.

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Why It Matters That My Health Conditions Didn't Matter at Boot Camp

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It matters to me that I have chronic health conditions that leave me less physically able than your average adult. Of course it does. I live every day of my life in pain and there are some things that no matter how hard I try, I just can’t make my body do. It matters that one of my health conditions is progressive and incurable. What matters most to me, though, is that it doesn’t matter to them.

So who is “them?” Let me take you back a year ago when I stood awkwardly at the edge of an oval in heavy ankle bracing and compression gloves wondering what on earth I was doing there. I was surrounded by people who were visibly fit and I was visibly impaired. There were boxing gloves on the ground, which instantly made me feel nauseous as the joints in my hands were already swollen and painful. I didn’t know anyone outside of the boot camp trainer, but I was aware of people glancing sideways at me already. They were probably wondering what on earth I was doing there, too.

The first activity was to jog or run around a 500-meter track, which was so far beyond my physical capability at that stage I nearly cried. I seriously debated just trying to sneak off while everyone was running to save myself any further embarrassment. Fortunately the trainer said something to me I have taken to every boot camp since: “Don’t worry about what everyone else is doing. Just keep moving.”

So that’s what I did. I walked when others ran. I moved my arms but didn’t connect when we boxed. I took longer and did less than anyone else there, but I kept moving. I turned up week after week and made my body work the best it could even when that wasn’t very well. Every week I walked away proud that I had turned up and tried my hardest.

Over time it dawned on me that my physical capability (or lack thereof) didn’t matter to the other boot campers. Not that they didn’t care or weren’t empathetic, but more that it had no particular impact on them. This was my first real experience of genuine acceptance and I was surprised that it came not from another person being OK with my disability, but rather from them not needing to be OK about it. What mattered was not what I did or how I did it, but rather that I persisted.

A year on and I stride confidently into boot camp and see myself surrounded by friends. A year on and no one looks sideways at me even when I am a long way behind everyone else. A year on and the sight of boxing gloves doesn’t scare me at all. A year on and when in doubt, I remember to not compare myself to others and to just keep moving. Best of all, I learned that true acceptance, to me, is not when my disability matters to others, but rather when it doesn’t matter to them at all.

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. Check out our Submit a Story page for more about our submission guidelines.

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I Am Not My Child's Therapist

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Almost five years have passed since the day I labored in a hospital tub and birthed the tiny baby a midwife immediately called “Peanut.” We named that baby Fiona and we cradled her unfathomably small, 4-pound-12-ounce body. In the hospital, we learned to drop-feed her, and once home I learned to breastfeed her, and we — my husband and I —learned so much more.

Image: Most of the picture is of a red wall. In the bottom right corner is my silhouette, looking down at a small baby in yellow, whose nursing.

We eventually learned about chromosomal deletions and meiosis. We learned about seizure variations, kidney dilation, oral stimulation and the minuscule increments in fine motor developments. We learned how to have the cheapest and most satisfying lunch at the children’s hospital (eat with the doctors in the cafeteria). We learned to stretch our daughter’s pronating feet, and we learned the best shoes to accommodate orthotics (Converse). We learned a few dozen ASL signs, and I personally learned the pros and cons of different communication apps, and I learned you never, ever pay a medical bill without first calling the doctor’s office and checking that they billed correctly. I learned to do a million things I don’t even know I know.

Today I realized one of those one million things. I realized it while having a conversation with Fiona’s grandfather, who was visiting from out of town. My father-in-law hasn’t seen Fiona in a few weeks, and he was not only amazed at the amount of food my 20-pound girl eats, as she shoveled a standard American breakfast of eggs and sausage into her mouth.

He was also amazed at her burgeoning speech.

“She’s really talking,” he said.

It’s true. Lately Fiona’s been doing what speech therapists call “approximating,” where her mouth tries its best at words, and she often gets close.

Bye bye is “guy guy.”

Hungry is “hahee.”

Potty is “ky-ee.”

Momma is “momma.” (I win.)

My father-in-law was understandably excited.

I agreed with him. She was “talking” more. “But,” I added, “there’s a lot of consonants she still can’t say.” She only has B, H, C, G and M at her disposal. I thought of the many instances when I have no idea what my girl’s saying. “Emma” is how she says Elmo, but it’s also how she says Elsa, Anna and someone she knows named Emma. On plenty of occasions, I look at Fiona clueless. In these moments, I pull her talker closer and wait. The sound in her mouth — “cah,” for instance — becomes a clear word in her talker’s electronic voice: coat, or towel, or bath.

My father-in-law — an optimist, a cheerleader, a champion of his granddaughter — offered this reply: “It won’t be long.” He thinks she’ll master more than B, H, C, G and M.

But I simply said, “We’ll see.” I couldn’t join him in his certainty. And this is when I realized one of the most important approaches I’ve taken in parenting Fiona. It’s a lesson that’s dear to me because it keeps me sane. I’ve learned to be wary of goal-setting.

If you have a background in teaching like me, you might hear a record skip. “Wait, what? Wary of goals? But goals drive instruction! Goals are like destinations on a road-trip, telling us where we’re headed! Goals articulate expectations, and if we don’t have any, then won’t we end up nowhere, or at the very least, only a block from where we started, kicking dirt beside a gas station, doing a serious disservice to our kids?”

I’m not anti-goal for Fiona. I want her teachers and therapists to have giant goals for her. I want them to see her and say, “Yes, she will walk, run, ride a tricycle, write her name, read a story, do mathematic calculations, create complex sentences with her talker…” etc.

It’s just that as Fiona’s mother, I can’t hold expectations over her. I don’t mean my “can’t” to be a moral one, as in I “shouldn’t” or “mustn’t.” I don’t mean in any way to tell you what you should do. I simply mean I can’t. I can’t say things like, “We want her walking by the summer” or “We aim for her to say ‘Dadda’ by June.”

I learned this lesson in the first year of parenting Fiona. We lived in Ohio then, and the state’s model for early intervention therapy was different than in Vermont. In Ohio the therapists came into our home purely as consultants. And because I worked fewer hours than my husband, I was the one to meet with the therapists, which meant they became consultants to me.

Baby Fiona, lying on a blanket, looking up.

They were in my living room to teach me how to be Fiona’s therapist. They got down on the floor with me and together we examined Fiona’s supine body and they gave me instructions on how to play with my daughter. They said they weren’t supposed to touch my kid too much. They said I was supposed to do most of the work. They showed me how to do various renditions of tummy time, how to move a toy across her line of sight to improve her tracking and how to rig a toy to encourage her kicking.

Frankly, I can’t remember all the things they told me to do because what I mostly remember from their visits is this: they left me with a handwritten list of therapeutic tasks I should do that week, and they sometimes left me in tears. I keenly remember one visit when, after a therapist shut the front door of our house, I walked to the dining room, pressed my back against a wall, and slid down in defeat, sobbing. I wanted to be a mother, not a therapist. I didn’t want the pressure to turn my kid into something other than who she was.

The whole endeavor felt counterintuitive to what I, a newbie parent, sensed was the primary job of parenting: to love one’s kid. Just as she is. Crawling or not crawling. Grasping toys or not gasping toys. Holding her own head up or not holding her own head up. Just love her. Every typical parent gets to do it. A typical parent gets to love their kid into every developmental stage without worry, without fret, without weekly “intervention” appointments because a typical kid’s development unfolds as naturally as the two new leaves are unfurling on my Bird of Paradise. There it is: sitting unassisted. There it is: making babble sounds. There it is: the first word. All as natural as seasons. With no extra work on a parent’s part.

I suspect other parents see no mutual exclusivity in loving their kids as they are and pushing them fiercely toward measurable goals. But for me, becoming Fiona’s daily therapist collided with the joy of loving her. In those early months, my success was measured by my daughter’s outcome, which seemed incredibly unfair to both of us. Was she developing good core strength? Was she advancing to stage two baby foods? Was she making new sounds with her mouth? If no and no and no, then I needed to do more. I needed to work harder. I needed to put in longer hours. The goal of making her different stole energy from the duty embedded in my very DNA: love her. Love her as is. Just love her.

When we moved to Vermont, where the therapists come to your house and work with your kid for an hour and put zero pressure on you to become them, I gave up the pressure to make my child different. I took up the job of accepting her as she was. I measured my success as a parent not on how well she advanced, but on how hugely, how unconditionally I could embrace the job of loving her.

This is not to say that I “gave up” on her development. I did not stop offering therapeutic support. I bought toys I thought would be developmentally beneficial. I offered new food textures that might combat her oral defensiveness. I researched alternative communication systems, bought an iPad and communication app, and set to teaching Fiona how to use it. I did these and many, many more, all for the same reason I water that Bird of Paradise each week. I want her to grow and thrive.

But I held expectations lightly. When would she walk? I didn’t know. Age 3? Age 4? Possibly not at all? (She walked by age 4.) And when will she make a B or a P sound? I’m not sure. I hope she will, and I suspect she might, but if her mouth is never able, then she has a talker by her side who can do the pronouncing for her. I plow forward, doing my best to relinquish  outcomes. It’s a tricky equanimity that parents of kids with disabilities must learn. It’s a fascinating bullet point on our unread, unseen, unknown resumes: how to strive without gripping. How to pursue something with equal parts passion and levity. It’s a gift our kids teach us.

So I told my father-in-law about this. And he nodded in understanding.

Fiona is in the foreground, looking at the camera, and her 3-year-old sister is in the background, looking at her Fee. They're on green grass, wearing pastel plaid dresses. They both have glittery butterfly wings on their backs.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. Check out our Submit a Story page for more about our submission guidelines.

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