Women's bathroom sign.

I hate this sign. Every time I see it, I hate it more. And it’s not for the reasons you might think.

I don’t hate women, or wheelchair users. I’m not a transgender woman and made to feel I don’t belong there.

It’s because my 7-year-old son has dystonic cerebral palsy, and uses a wheelchair. He lacks the upper-body strength and torso control to use the toilet independently, or even with my support, despite the occasional availability of handrails. It’s because he needs to be  changed, and there is no place to put him other than the floor. It’s because I have to lay my son down on disgusting bathroom floors, which are covered by an average of 77,000 bacteria. It’s because he is getting bigger and heavier every year, and it’s getting harder on me to lower him safely to the floor and bend down and lift him again. It’s because as he ages and grows wiser, it is getting increasingly uncomfortable for him and I to go together to a room set up for girls and women.

I was naïve, I admit.

I thought that just sharing our struggle would be enough to inspire people to support Changing Places. I thought when I told people about exposing him to these germs and situations, people would understand. I thought sharing about how we have changed him in the back of our car, exposed to the elements and trying to keep his privacy, that people would “get it” and help make improvements for people with similar problems. I thought people just needed to become aware, and they would do the “right thing” to make his world accessible on their own.

I thought wrong.

As it turns out, it seems people with disabilities just don’t rate high enough on the social totem pole here in the USA. My son does not have a convenient, private place to be changed anywhere other than at home. In fact, when he lays on the floor on our mat in the public restroom, on the dirty, germy, floor that thousands trample on, one can see him under the stall doors.

It was suggested to me by an airport representative that we could use the nursing room at a major local airport, as there is a bench there.  As I was once a nursing mom, I can tell you how “well” this would be received. These rooms were designed to give babies a comfortable and sanitary place to eat away from the smells and germs of the restroom. I am not willing to subject my son to the scowls of disapproving mothers on top of the embarrassment he already endures.

It’s not just us.

There are roughly 4 in 100 people that need these changes. This challenge is often not spoken about. For those with hidden disabilities, such as urinary incontinence or developmental challenges that limit full toilet training, it’s often quite painful to raise this issue. Other folks simply stay home, or cut outings short because it’s too difficult. The need is bigger than you can see, and goes far beyond my son’s needs.

The ADA has been in place for over 25 years in an effort to provide inclusion for everyone. But the minimum standards for architectural design just aren’t sufficient for millions of Americans. We need adult-sized changing-tables, unisex restrooms to allow for opposite gender caregivers, sufficient space, and lifts for transfering.

There are people who have said that even a changing table is extravagant or gluttonous. That we should “suck it up.” That we should simply adapt to the world and not expect the world to cater to us. That we shouldn’t expect large businesses or locales to finance changes for just a few. But we are not just a few. We are 4% of the population in the U.S. alone.

No one complained about extravagance when restrooms started installing automatic toilets, hand dryers, seat covers, and hooks for a purse. These modern conveniences are missed when they aren’t there. And I ask these people who say we are requesting too much… What if you became disabled tomorrow? Or your loved one? The disabled population is the biggest minority that anyone could become a part of, at any time. Would you be just fine laying on a dirty bathroom floor?

It’s not a matter of money. It’s a matter of whether you think millions of us are worth it. That we deserve the basic right of human dignity.

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Dear gate agents and flight attendants,

I’m one of those passengers who “shouldn’t” be in the pre-board line.

You know the ones.

I’m dressed nicely and I have makeup on; I appear healthy and able-bodied. I don’t use a wheelchair. I’m young. I sometimes sit on the floor and stretch. Aside from my pillow and sometimes my cane and wrist braces, there is not much evidence of why I’m there. According to popular opinion, I don’t look disabled.

You want to do your job well, and part of that is accommodating people with disabilities. But often, when I request a pre-board pass, you look at me like maybe I’m cheating, like maybe I learned a trick somewhere just to get a better seat or not wait in line. Maybe you think I’m smug or even entitled. Sometimes you question if I need the pre-board pass on the basis of disability, right after you sweetly, wordlessly hand one to the woman in front of me – the soft-spoken, grey-haired, hunched-over one using her cane.

I have learned to expect to be pre-judged for pre-boarding, but that hasn’t made me feel any better when it happens. I try not to think about the other healthy-appearing disabled people who have stopped asking for accommodations when they fly, who now try instead to blend in – to reduce stigma and the possible trauma of an error of assumption and ensuing judgment.

We hear stories like this all the time about young-, healthy-, able-appearing people who have disabled placards in their cars and receive nasty stares, notes, and even comments of disdain and judgment. But it doesn’t just happen when people drive. It happens when we fly, too, when we can’t carry our disabled placards around our necks. Maybe we should. Would that help?

I’m hurting. I’m doing everything I can to appear healthy. If I showed up looking how I actually feel, you might not even let me on the plane. Besides, I still want to look good on the outside; it helps me feel more confident. I want you to know that I wish I felt as good as I appear, and I would gladly trade a healthy body for the one I have.

Dear flight attendants,

I do not like boarding the plane before everyone else. I don’t like that it calls attention to me and means I will be on the plane longer. I fear I’ll be asked to give my seat to someone who fits the disabled image better than me, as if looking at me fills the criteria for that judgment. There’s no way you could know the debilitating pain I try to endure every moment just by looking at me.

I always sit in an aisle seat near the front of the plane so I can move my legs more easily during the flight. When I can, I sit in the very front row so I can stretch without having to get up so often. On shorter flights, I sometimes even treat myself to the front row window seat because I can squeeze past my neighbors to stretch without bothering them as much. How I miss sitting by the window all the time!

I’m also one of those passengers who requests a can (not just a cup) of orange juice or water multiple times during the flight. I see the disdain on your face, and I hear it in your pert responses. I wish I could tell you with one glance that I need those extra drinks because without them I could become a healthcare emergency mid-flight. I wish I could tell you that I need those drinks to take my pain pills, and so my joints are lubricated enough to get off the plane when we land. I wish I could tell you with one blink that I miss the days when I would purposefully drink very little so I would not have to get up to pee. I wish I could tell you these things every time you give me that “look” – you know the one.

I try so very hard to be gracious, because I know you experience a lot of rude people. But the truth is that flying is now one of my least favorite things. It causes my pain and fatigue to grow exponentially, along with my fear of the germs that could attack my weak immune system and send me to the hospital. Flying somewhere used to be a treat; now it is a punishment that takes days or more to recover from.

Attendants, you have a lot to respond to at work. The babies who cry when their ears pop, people who go into a rage when they have to check a carry-on bag last minute, people who are traveling to funerals, children traveling without guardians, people who arrive drunk or with a contagious flu, the pilots who need their bathroom breaks. You probably also think about home and when you will return to your own bed.

I applaud you for the multi-tasking you do so well, and I understand I am just one more demand of your complicated job. Yet I hope this letter helps shed light on some thoughts that go on in the minds of many young, able-appearing people with disabilities who fly.

For the times you’ve seen my pain and offered a little something extra, thank you. For the times you have responded with grace even when I am too tired to give you the smile and thanks you deserve, thank you. And for reading this letter, thank you.

Follow this journey on Being Charis.

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I live in the U.K. and currently employ four carers privately with the money I receive from my Personal Health Budget, which is paid by my council. I was one of the “test cases” for these budgets, to see if giving people with a disability more control over their care and saving the council the pricey care agency fees really was the perfect solution it appeared to be. For me, the budget allowed me to hire the people I wanted and to set my own hours, to allow me to commute into London to study law at university. For three years, this worked really well. But all good things must come to an end, which is exactly what happened when one of my carers raised a grievance, subjected me to emotional abuse, and threatened to walk out if her demands were not met.

I have employers’ insurance, who advised me on how to deal with her grievance and meet all my obligations as an employer. They said the law currently didn’t cover situations like this, so I was forced to have her keep working for me, regardless of my fear and anxiety. They told me that despite feeling completely unsafe with the carer as a result of her threat to walk out  – which for me could lead to death – her threat wasn’t “bad enough” to be gross misconduct, and as she hadn’t actually walked out yet, there were no grounds to dismiss her. I believe no level of threat or discomfort should be tolerated, and if the law doesn’t cover this, then the law needs to change.

I had to handle her grievance by myself, as the council and payroll services I use told me they were unable to attend any meeting other than to minute-take. I have no experience chairing a formal meeting or dealing with employment issues, as I am only 22 and have never had a permanent job. Yet I was expected to do everything to the letter of employment law, and any mistake I made could open me up to a lawsuit which my insurance may or may not cover. This was a terrifying prospect for me, and I began to think about all the other people who have these budgets and don’t have a law degree or a supportive family behind them.

How can we be held to the same employment standards as a company when we don’t have their resources, such as a HR department, nor do we have any of the workplace remedies? When you work 1 on 1 with your carer, there isn’t an option to transfer them to another department, or have them work with someone else they get along with. Companies and most employers do not need their employees to do personal and life-dependent care for them, which requires an excellent working relationship.

The only option I had was to keep receiving care from a person I no longer trusted or felt comfortable with. This situation is not unique to me, and is something disabled people are far too often made to go through. But until you experience it, you have no idea how it really feels — and once you have, you want to make sure it never happens again.

When my carer returned to work, she would not make any eye contact with me, and would not speak to me other than “yes” or “no” for 12 hours, 3 days and 2 nights a week. Take a moment to think about being cared for in that toxic atmosphere. It took a huge toll on my physical and mental health. Again, I had to handle this on my own, as I was the employer and this was a workplace issue. I was almost too scared to talk to her about my discomfort, but I knew if I didn’t, my situation wouldn’t improve and my health would continue to decline. The informal talk did not go well, and I was advised to hold another formal meeting by myself. My carer ended up resigning the day before the meeting, so thankfully I did not have to go through with it.

However, the problem does not stop there. There needs to be much better support for people with these types of budgets. The councils cannot simply make someone an employer, save lots of money, and then wash their hands of any responsibility. There needs to be a restructure to the budgets to provide adequate support for the disabled employer who relies on personal and life-dependent care. I believe it is unfair to ask that we face complex and often hostile issues without adequate support from Health or Social Care. We need recognition that we rely on our carers for everything, so when that relationship breaks down, it is extremely serious. I accept we have responsibilities as employers and we can’t ignore them, but we need more support and recognition in the eyes of the law.

I’m trying to start a campaign to get better support for disabled employers. I’m looking for people to share their experiences of problems with carers hired through a budget of any kind, and how you went about dealing with it. I want to know if you had support, or if you didn’t, what support you would have found helpful. You will be kept anonymous if you prefer. Please contact me to participate.

This piece was originally published on Disability United.

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Often when we think about disabled people, we believe they’re born that way. If we were born healthy, then we’re in the clear. This is completely untrue: about 20 percent of the world has a disability, but only around 3 percent of people were born with a birth defect. While people with disabilities may be the biggest minority, there is still so little awareness, leading to a lot of judgment.

I was born able-bodied, and never imagined I could ever be anything different. I had some issues, as we all do, but nothing a simple surgery and some recovery time wouldn’t fix. Around the age of 12, I realized things weren’t as they should be. By my final year of high school, I could no longer walk and needed a wheelchair. I remember the day I went with my parents to buy my wheelchair so clearly. We picked one out, and I went home and cried.

I’d always been an independent person, and wanted to take on the world by myself, but now I was at the point where I couldn’t even brush my own hair because my muscles were too weak and my joints were too sore. I didn’t cry because of my disorder. I cried because I’d lost my independence. More than that, I felt I wasn’t strong and ambitious anymore. I was someone people would pity and look down on. They’d see me and feel sorry for me. I told my parents I didn’t want to go to school anymore, because I was worried about what people would think.

The saddest part is that I was right. People would see me in my chair and look away because my disability made them uncomfortable. Others would stare, probably because they didn’t know how else to react. When other people would push my wheelchair, people would talk over me to the person assisting me, as if I didn’t exist. Others referred to me as “the wheelchair.” Regardless of how it manifested, people judged me. They were forming notions of who I was based purely on the fact that I needed a wheelchair.

After two years of intense physical therapy, I moved from being in a wheelchair, to walking on crutches, to walking by myself. However, being able to walk again didn’t stop the judgment. My joint hypermobility syndrome and fibromyalgia mean that I have intense joint and muscle pain, so I can’t walk for long or far distances. I’ve heard people say horrible things when they see my father carry me on his back up the dunes of the Namibian desert, or when my brother carried me on his shoulders through the parking lot to the car, or when my boyfriend carried me in his arms across the university campus. “Why is that girl taking advantage of him?”

They look at me with distaste when I sit in the corner of the store, not realizing I don’t have the strength to keep myself up anymore. It’s all I can do to stop myself from bursting into tears. The people in the restaurant at the table next to me make faces of disdain when they see me pull out the 8 tablets I have to take with every meal, not knowing I wouldn’t make it through the day without them. People see me get out of my car after parking in the disabled space and glare as if I’ve done something reprehensible, not realizing that had I parked anywhere else, I probably wouldn’t be able to get myself back to my car.

All I wanted was to be me — the person I was before I got sick. It’s so difficult to be that and do that when people treat you differently. To those of you who see someone with a disability, or someone doing something out of the ordinary: rather than judging, take some time out to ask. I’d be happy to tell you why I do what I do. I’m sure many others with illnesses or disabilities would also rather discuss the issue than deal with the judgment. By taking a second to think, you can avoid causing someone more pain than they may already going through. The removal of stigmas and unfair judgment goes a long way to making life with disabilities easier.

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Whenever I pull my car into a parking lot and see an unoccupied accessible parking space, I go through a huge range of emotions. At first, it’s relief at having found a spot. But then I approach the parking space with trepidation, because I don’t look like the stereotypical user of one of these spaces. I have long brown wavy hair, and look relatively young for my age. Music playing, sunglasses on, kids in the backseat, I drive my car in quickly, or take advantage of my vehicle’s backup camera and park backwards. People in the parking lot are watching me as I take up the space. Perhaps they’re thinking that I’m parking illegally, without a permit. Based on the looks I get from some people, I feel like I don’t belong in that parking space and shouldn’t be using it. I feel like I’m being judged.

Even when I present the permit and place it on my dashboard, I still feel like I’m breaking the law. I get more dirty looks. Are they thinking that I’m abusing the use of a permit that doesn’t belong to me? By the time I pull my things together and am ready to get out of the car, I’m not surprised to see a few of the onlookers continue to watch me, some overtly while others more surreptitiously. They probably wonder, What is her disability?

That is, until I slowly exit the driver’s seat with a painful grimace on my face and my cane in hand. Slowly, I lock my car doors and gather all of my belongings on the crook of my left arm. My right hand holds my cane. I walk away from my vehicle and begin to feel the justification I deserve from these spectators. The cane in hand seems to validate me. Phew! It feels like judgment time has ended. Until the next time I park in a public space.

That day happened a few months ago, when I was leaving my health club. Since the accessible parking space is very close to the front doors of the gym, I usually leave my cane in the car. Without my cane, I walk with a severe left-leaning limp. Walking without my cane, I’m told I look like I have “something wrong with my back” or I “must be in a lot of pain.” My walk is slow and arduous. But since the distance between my car and the front doors of the gym is close, most days I can manage without my cane.

On one particular morning, as I was leaving the gym, there was a man walking a few steps behind me. I took the three steps down from the gym doors like I usually do, holding onto the stair rail and placing one foot on a step, followed by the other foot. When both feet are planted on the same step, I find my balance before descending to the next step below. Good leg to heaven, bad leg to hell, I was taught. I heard this man’s footsteps closely behind me the entire way down. When my feet landed on the pavement, I began my slow and limping gait towards my car. The man was still behind me. As I unlocked the driver’s door and began to sit down on the driver’s seat before lifting my left leg in, this man came right up to my door, stood in front of my face and said, “Like you really need this space.”

I couldn’t believe my ears. I was shocked and momentarily speechless. “Yes, I do need this space, actually,” I said. Perhaps I should’ve stopped there, but I didn’t. “I had a cancer growing in my leg, and good part of my femur was cut off, so I now have a prosthetic…” I said, but stopped my sentence when I saw him shake his head, as if I was blabbering on and he didn’t believe me. Then he turned around and began to walk away. I was fuming. I started my car, rolled down the window and shouted, “Thank you for asking.” He shook his head.

I drove away feeling frazzled. In the hours after this incident, I felt deeply hurt at being treated this way. Hadn’t I already been through enough in losing my leg? Of course this man would have no idea what I’ve been through, but he chose to question me even after seeing how severely I limp.

I lost three major muscle groups in a surgery to cut out a rare, malignant cancer growing on the top of my left femur. Because of the loss of these muscles and an internal prosthetic, I will walk with a cane or forearm crutch for the rest of my life. I endure pain and discomfort daily, and my mobility is limited. It took me many months to embrace and eventually own this unique disability of mine, which was challenging enough. But the stares and dirty looks I get when people see me driving into a reserved space for persons with disabilities have been difficult as well.

I wish these people would understand that appearances aren’t everything. I may look fine from a seated position, but as soon as I stand up, everyone can see that I’m unable to walk, stand and move like an able-bodied person. I wish anyone who might be thinking I’m abusing the parking space would take a second and make the opposite assumption: that I need it. No questions should be asked. Having a disability can be hard enough as it is. I wish they didn’t have to make it tougher.

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As a parent of a medically fragile child, I am pretty used to getting the “Momspiration” lines. “I just don’t know how you do it.” “You are so strong.” “I could never do what you do.” Really? If your kid was diagnosed with an illness, you would stand by them. You would research treatments and take them to physical therapy and do whatever takes. Because that’s what moms do!

You know who should be your momspiration? Stay-at-home moms. Moms of multiple children. Moms who shower every day. Moms who make their kids’ Halloween costumes. Working moms. Those are really inspirational moms.

In fact, moms in general are inspirational! Generate life form? Check! Clean up that life form’s poop? Check! Don’t harm that life form when they roll their eyes at you in public? Check! (Mostly) So maybe all moms should get the “I don’t know how you do it.” But when it comes to moms with children who have special needs, a simple, “You are doing a great job” will suffice. Because as much as it seems like we are super moms from the outside for handling extreme circumstances, on the inside we are really feeling like the extreme circumstances are forcing our ability to do anything else out.

Super reality check: my kids don’t always brush their teeth, and we are never good at being on any kind of schedule, and as much as we try and limit iPad time there seems to always be one day where I look over and don’t remember how long they have been staring at that screen. Unfortunately, the list could go on and on of items I am “supposed” to be doing and am failing at because I am trying to keep us all healthy and well adjusted to our life. So when you run into us at the pizza place it could be a special treat or it could be that I just ran out of energy to cook for the third night in a row, but there is no need to congratulate me for coming out in public with my child in a wheelchair.

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Thinkstock illustration by Dorling Kindersley

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