How We Can Show Society What's 'Behind the Disability'

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These days people with disabilities are finding our voices and making them heard. Whether we are designers with Down syndrome in Guatemala, teen models with cerebral palsy in Spain, or we are strutting or wheeling down the catwalk with amputated limbs, we are making our presence felt. For too long we have allowed those who haven’t walked in our shoes to control the narrative of our stories. It’s time we take control and change the tone of the story of disabilities. We constitute the largest minority group, yet other smaller minority groups have gained more prominence than us. I believe this is largely because we are seen as a cost center, a non-income generating group who keep taking the resources of our countries without yielding profits.

While some of us cannot work and thus have to use a welfare program of some sort, many of us are working and contributing to the wealth of our countries. Whether or not we are being “productive,” we need to get visibility and thus compel industries to consider our needs when designing their products, because we also have buying power. Our mark must be seen across all industries, especially those that design our equipment, prostheses, and shoes.

As a child, I hated those bulky orthopedic shoes we were all given to wear with leg braces. They were either black or brown, bulky, heavy and unfashionable. When I was given the option of wearing them with Nike trainers, I jumped at it – they came in many different colors and were much nicer from an aesthetic point of view.

What if we could use our experiences to influence the design of the orthopedic shoes being manufactured these days? Or to jazz up our rollators, crutches, wheelchairs? What if we could catch the attention of Christian Louboutin and have him design our orthopedic shoes? Yeah, it’ll be super pricey but we could aspire to one day own a pair of Louboutins just like able-bodied shoe lovers.

For many people, our disabilities don’t define us; they are just a part of who we are, like a leg or an arm. We have the same emotional, psychological and sexual makeup as everyone else. When we start controlling the narrative of our story, many more people will get to know the real us, who we are behind the images our physical and/or mental conditions project.

What if we started a social media campaign and introduced ourselves by answering these questions: Who are you? What are your likes/dislikes? What do you do? And lastly, what is your disability?

I am Farida, a software engineer from Ghana. I love reading and watching “The Blacklist” …and I have cerebral palsy. #BehindTheDisability

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The Ultimate Guide to Finding Shoes That Fit Over Braces

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After my 1-year-old son with cerebral palsy received his first pair of braces, I thought “This isn’t so bad, I can get some shoes around these.” I was wrong. Even though he started out with the smaller SMOs, it was still hard to get shoes that went around those things. He is now in AFOs, and it is even more difficult to find shoes that work. I had a very defeating day in the mall dragging my son to every single store trying to shove shoes over his braces. If you are there, this article is for you.

I have not personally tried every shoe I’m about to list. I have included every single shoe I have tried or have heard from other parents that they have tried and it worked for them. This information is difficult to come by, so I wanted to make it readily available to all parents who need it.

Nike Flyease

Nike is my favorite company ever. Nike teamed up with Lebron James to develop a shoe for a fan who has trouble tying his shoes due to cerebral palsy. You can read all about this wonderful story, The Flyease Journey. However, my child was a 1-year-old and needed a very small size; the smallest they offered in the Flyease series was for a 4-year-old. After a quick chat with their customer service, they told me they would send my request for a smaller size to their production team. Two weeks later, they had smaller sizes listed on their website. (Yes, really.) I ordered two pairs after one got chewed on by a dog.

The shoes have an awesome zipper strap that make getting the shoes on so much easier around braces. Not only are they great for people who find tying shoes difficult, but also for parents who are tired of shoving, tugging, shimmying, and shaking their kid’s shoes over their braces. It’s remarkably easy to get these things on. I even see they now offer options in Wide and Extra-Wide. I used regular width, 2 sizes larger than his foot size and they worked great.

Converse

Regular Converse All Star Low Top shoes went over my son’s new larger braces (AFOs) perfectly. We could not use the one with a velcro strap because the strap would reach across, but the strings worked out well. We picked up a pair in his size at Kohl’s, but they can be found at many department stores and even Target. Converse is owned by Nike, so that obviously gets them brownie points with me.

Converse also made a shoe called the Converse All Star Easy Slip that folds back and allows an easier entry. I haven’t tried them yet, but have heard good things about them.
Cons – the Converse website doesn’t seem to carry the Easy Slip, but it can be found on several websites including Amazon.

Stride Rite

I’ll admit Stride Rite isn’t my favorite, but many parents would sing their praises. I ended up with a pair of their shoes as the first pair we ever had with braces. My son had his smallest braces at the time. Stride Rite carries XW and XXW sizes that will fit over braces. The selection for XXW is very small and the shoes we had were XW.

Cons – they were difficult to get on and the strap constantly flipped off. I ended up trying to sew it down and extend it, but I’m not the greatest seamstress and so it wasn’t a great plan on my part. The shoe itself was hard, and if you’ve ever been kicked or had your toe stepped on by a kid with braces, you know what I mean. These shoes hurt. They worked at the time, but with all the other choices, I probably won’t be back.

Crocs

Crocs are the best. I’ve gotten the Kid’s Classic Croc and it’s perfect when you’re in a rush. Are Crocs the cutest shoe out there? Not at all. But when they’ve got Ninja Turtles or Pink Sparkles, then who cares? Like Converse, these are also easily picked up in most department stores and on Amazon. A quick tip to get them on – push the strap down past the heel of the shoe to make a clear opening, slip the shoe on, then pull the strap up behind the foot.

Cons – be careful not to get a Croc with a significant arch in the sole. Most of the shoes listed here can have their soles removed, but on the Croc it’s not possible. Arches in shoes can cause heavier in-toeing, so be careful with your selection. Get as flat as possible in all shoes.

PLAE

I have not gotten to order a pair of these yet, but they appear to be awesome. Their designs are great and their customer service can help you in choosing the best style to go with orthotics. What makes them unique is their extra long strap option that makes getting shoes over orthotics much easier, not to mention you can make those straps custom. Their shoes are also lightweight and flexible with removable insoles. They have a ton of cool designs I can’t wait to try. Finding cute shoes for AFOs are difficult, and I’ve heard some rave reviews of these.

Keeping Pace

Keeping Pace is a company dedicated to making shoes only for orthotic purposes. The shoe has an easy back entry to make getting on and off easier. Cons – I’m not loving their styles as they are very generic and bulky. Their prices are significantly higher than the other shoes listed, and you can’t order online, you have to call in. I don’t think I’ve made a “phone order” since 1997 (my mom did it). But, since they serve only our orthotic community, I felt they were worth mentioning.

Hatchbacks

Hatchbacks is another company serving only the special needs community. Their shoes are cuter than Keeping Pace and you can order online. Their shoes offer a back entry that is so helpful. Cons — Their options are limited and their prices are also a little steep.

Stonzwear Boots

You focus on getting shoes that fit… and then it snows. Boots are impossible to get over braces most of the time, so I had no idea what to do whenever it was snowing. I wanted him to be able to play outside too. And then I found out about these babies. You just pop them on right over whatever shoe he/she already has on, pull the cords and boom! You’ve got a snow boot over their braces. Do you have a shopping bag over their shoes to keep their regular shoes from getting wet? No. You are a super parent and have these cute little things on them. I personally will be getting the fire trucks for next season. Cons – You haven’t bought them yet.

Honorable Mentions

Answer 2 Shoes are specifically designed by Apis Footwear for orthotics. K-Swiss is reported to work as long as they have a flat bottom. They offer wide and XW sizes for kids, although those particular options don’t offer the cutest of styles. New Balance also offers wide and XW options, and like K-Swiss, you would need to make sure they are flat. They have more XW options than K-Swiss. Smartfit shoes by Payless have been reported as helpful. Obviously, they are on the cheap side, which is awesome, and they have several wide options. If you are in search of dress shoes for boys, this is where I would recommend you start. They have a couple for girls, but they are not the cutest.

Socks

I am not a fan of paying $13 for one pair of socks for a now 2-year-old. But I will list the places I have heard of for people who may have trouble finding socks elsewhere or need them for a specific reason. Remember to speak with your orthotist if there is ever any redness or rubbing from braces. It may not be the socks.

I have used socks from Target and Amazon for my son. When he went up to a higher brace, it was a little harder to find knee-high socks for a 2-year-old boy (they have a ton for girls and they are adorable). But all you have to do is search Amazon for “toddler boy knee high socks” and the latest collection will come up. Our local Target store carries knee high socks for toddler girls. Once he gets above 3 years old, it will be easier to find. Almost all athletic brands, such as Nike, make tall athletic (soccer) socks that go to the knee or above and they carry them in many department stores. They just don’t have soccer knee socks for 2-year-olds. Bummer.

Cascade Dafo – $5 – $13 per pair
AFOsock.com – $4.50 – $5.00 per pair
SmartKnitKids – $7.95 per pair (seamless for sensory issues)
Keeping Pace Socks – $17.98 for 2 pairs – $62.99 for 6 pairs

Follow this journey on Special Needs Rant.

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Photo via Nike.

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Why I Break the 'Taboo' of Talking About Disability

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Is it reasonable or even cool to talk about your disability in public, or should you just accept that you’re human just like everyone else in the world?

I tend to think talking about my disability should be first and foremost in my mind, and I get irritated when my disability gets put on the back burner in society. Talking about certain challenges many people haven’t experienced before or think are difficult seems to make them uncomfortable. My everyday conundrum is why is my disability shunned?

In today’s society, many people consider being politically correct very important. Popular culture today stresses that we should accept any individual, regardless of race, gender, sexual preference or disability. But I’m afraid political correctness has nearly eradicated the ability for an able-bodied individual to ask questions and learn about differences. Yet I believe this is done in part because the average person wants and tries to incorporate us into society.

Every disabled individual deserves to have the same rights as everyone else, but my
concern is this: how and when are we going to move forward if the average person doesn’t know or comprehend our struggles? I believe it’s up to us as disabled people to teach our peers about the different struggles we face in our everyday lives. We need disabled leaders in our community just as much as we need to be accepted in society. Once this happens, then people can truly start learning.

Another factor that ties into the political correctness scenario is that we disabled people face a more difficult job market and housing situation. The job market for people with disabilities is improving, but still needs a lot of work. I believe this is due in part to companies not understanding that a disabled person can meet the job requirements, or not taking the time to fully accommodate workers. Although only 17.5 percent of people with disabilities are employed, I believe this ugly statistic can be changed through job coaching, building resumes and peer support groups. But we disabled people need to be aware of the facts and talk about our challenges.

Many people say “my disability doesn’t define me.” I choose to say “How can I make my disability into ability?” I do this by advocating constantly on social media, writing articles on The Mighty and being a part of an adult support group. I have recognized that I can make a thing people some perceive as ugly into something beautiful simply by talking about it. This is why I exist. I exist to teach others about how I am different, how I have embraced my difference and how I can make it beautiful.

I believe talking about my disability has become taboo in certain situations, but that doesn’t mean I won’t try to roll past the negativity.

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Why United Airlines Abusing a Passenger Doesn't Surprise Me as a Disabled Traveler

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Along with the rest of the world, I watched the recent video of a doctor being dragged from a United Airlines flight with horror. Horror, but not surprise. While the physical violence in this incident was egregious and unusual, similar incidents occur regularly at airports and on flights around the country. They happen to people with disabilities who just want to travel by air like everyone else, but face discrimination due to antiquated laws and poorly trained staff.

As a travel blogger who uses a wheelchair, I have experienced and heard about numerous instances of people with disabilities being mistreated on airplanes. Just two weeks ago, Mark E. Smith, a manager at Pride Mobility Products and well-known disability advocate, was forcibly removed from an American Airlines flight with no explanation. He was then abandoned in an aisle chair on a jetway for half an hour before his power wheelchair was returned to him, improperly assembled. He wrote about being “discarded as a human being” and humiliated in front of other passengers on his blog. American Airlines has still not satisfactorily resolved the situation, claiming his wheelchair wouldn’t fit in the cargo hold even though it is smaller than the dimensions of the door.

Unfortunately, incidents like this are far too common. In 2015, D’Arcee Neal, who has cerebral palsy, needed to use the restroom after a long United Airlines flight. After waiting over 30 minutes for an aisle chair, he had no choice but to crawl off the airplane as flight personnel watched and did nothing to help. In March 2017, Sue Martin got on an American Airlines flight and discovered the bulkhead seating she reserved was too cramped for her guide dog. When she requested a different seat, another passenger gave her his first class seat and all seemed resolved. But just before takeoff, she was forced off the airplane after being told the captain didn’t want her guide dog on board and that service animals weren’t allowed in first class seating, which is false. And Army veteran Lisa McCombs filed a lawsuit against American Airlines after they denied her right to fly with her service dog.

There have been violent incidents, too. In 2016, a girl with cancer, vision and hearing disabilities was beaten bloody by TSA agents at a security checkpoint. In March 2017, a boy with sensory processing disorder was subjected to a groping pat-down by a TSA officer. And these are just the stories that make the news. There are many more. Travelers with disabilities routinely deal with broken power wheelchairs, being stranded in cabins while waiting for an aisle chair, invasive questioning about medications and mobility devices and airline staff treating us like potential criminals or burdens. But it took abuse happening to a person without a disability to truly get the world’s attention.

I must admit I find that frustrating, but now that you’re all listening, we people with disabilities could use your support. United CEO’s comments aside, the unfortunate gentleman who was beaten will most likely get justice. He’ll get numerous apologies and the big settlement check he deserves. But what about the rest of us? I fear after all the outrage dies down, not much will change with how airplane passengers with disabilities are treated. We’ll still be subjected to bullying from staff who aren’t quite evil enough to beat us, but make travel a nightmare nonetheless. And we still won’t have a strong enough law to fix the problems with air travel accessibility.

Many people don’t know that the Americans With Disabilities Act doesn’t apply to airlines. They are covered by a more limited law, the Air Carrier Access Act, which predates the ADA and offers far less protection for disabled passengers. For example, unlike other forms of transportation such as buses and trains, people who use wheelchairs cannot sit in them in the airplane cabin. Some larger airplanes provide space for a folding wheelchair to be stored at the front, but the majority of wheelchairs are placed in cargo, where they are at risk of being damaged during handling or by other baggage. It can require three or more baggage handlers to carry a 300-pound power wheelchair into the cargo hold, as most airlines don’t have a device to lift them. I once had the terrifying experience of watching them drop my wheelchair. I then had to wait through a four-hour flight to find out if it would work when I arrived.

While their wheelchair faces an uncertain fate in cargo, people with disabilities must sit in a standard airplane seat. Although they can bring extra padding or supports, it’s difficult to use them in cramped plane seats. Standard seats can be painful and even unsafe for individuals who have scoliosis or are prone to pressure sores or blood clots. And no, airplane bathrooms aren’t accessible either. A person with a disability who is usually continent may be forced to wear a diaper simply because they can’t get to the bathroom during a long flight.

These issues could all be resolved if airplanes were subject to the same rules as buses — if wheelchairs had to be accommodated in the cabin. There’s proof it can work — All Wheels Up recently crash tested a tie-down system for airplane cabins — but airlines would have to install removable seats and slightly reduce capacity on flights with wheelchairs in the cabin. Since airlines seem to be bent on cramming as many humans into a tin can as possible, legislation would most likely be needed, but in the long run, it would be worthwhile. The cumbersome process of loading mobility equipment into cargo and lifting disabled passengers into seats contributes to flight delays, and the cost of repairing damaged mobility equipment reduces airlines’ profits and contributes to higher ticket prices.

When staff are properly trained in helping people with disabilities, it reduces delays and makes flying a more peaceful experience. I don’t fly anymore due to wheelchair damage and other bad experiences, but before that, I had many good experiences. When I think about what distinguished the good experiences from the bad ones, it wasn’t about whether anything went wrong. It was how staff handled the situation. In the past, even with limited laws and protections, I was treated with kindness and respect. Pilots would stop by my seat to say hello and smile at my service dog. If my wheelchair sustained minor damage, it was fixed on the spot by an airline mechanic. Where there is kindness and genuine caring, we can make the best of a difficult situation as travelers. What happened to that kind of customer service? It seems notably absent from United Airlines and American Airlines, the carriers cited in each of the incidents listed above.

We need to start holding airlines accountable for how they treat all passengers, regardless of race, ethnicity, disability, gender or any other “difference.” If you witness abuse or discrimination, stand up for your fellow passenger, or if you feel unsafe doing so, take video of the incident. The more we expose abusive airline practices, the safer it will be for everyone who travels by air. Let’s make the skies friendly again.

Follow this journey on Free Wheelin’.

Image via Pixabay.

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When People Say 'I Don't See Your Wheelchair'

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This might surprise a lot of people, but it bothers me when someone says they don’t “see my wheelchair” or my disability. It’s taken me a number of years to figure out why this bothers me so much. Of course, I want people to recognize my humanity first, right? Of course, I want my friends and family to see me – the weird, “Lord of the Rings” loving, occasionally overly-emotional, funny, theology nerd they’ve known for 30 years — first, right? Right!

Lisa Hefferman.
Lisa Hefferman.

But here’s the thing: having been born with spina bifida and being a full-time wheelchair user has shaped me and who I am in the world. The fact that I have a disability is a part of my reality I want others to see! That’s because, along with the wheelchair, they will see a young woman whose father’s death due to complications of multiple sclerosis has driven her to continue his work of advocating for people with disabilities. They will see a sister and daughter who would not have completed college or seminary without the encouragement, pushing, and support of her mother and brother. They will see a disability theologian and pastor who would not have been open to the work of the Holy Spirit in her life without friends who said, “You’ll become a pastor. Just wait.” or “the Church needs to hear your voice.”

In the end, “the thing” is that I would not be the person I am without my disability. Sure, I have bad or “down” days (sometimes weeks) because of the physical and relational struggles that have come along with it. It would be foolish or dishonest to say that I don’t sometimes wish I hadn’t been born with spina bifida when I have one of those bad days. As I get older and have begun to own who I am and all I’ve been through, though, those days don’t come as often as they did when I was a child. Today’s struggles are like those of a lot of women who are my age: trying to discern what comes next in my early 30’s as I hope to take a new direction in my vocation, and figuring out where future relationships and family fit into that. I just get to navigate those things sitting down, rather than standing up!

As I navigate this life from my wheelchair, my hope and prayer is that the “-abled” world around me can understand this: When you tell me (and perhaps others like me) that you don’t see my disability, we may hear it in a way other than you intend. For my part, I hear you saying: “Having a disability is bad, and something to be pitied or unwanted. You’re more than this negative thing in your life.” The message that comes across is that others believe I hate my disability, so I must want it to be forgotten about so I can be viewed as a whole person by others.

Newsflash: I am a whole person. All persons with disabilities are “whole.” Our realities don’t match up with a world that looks to ridiculous standards of beauty, wealth, and physical and mental perfection in order to be seen as a whole person — as fully human. And you know what? That’s OK! People with disabilities have the same range of emotions, desires, and aspirations as those without disabilities. The problem is that attitudes and structures exist which limit how we can participate in the world. That is maddening and heartbreaking for me, not just because of my own life experiences, but because I know so many people with disabilities who could live into the fullness of who I believe God created them to be if the “-abled” world would open up even just a little bit more.

Great strides have been made with that since the ADA was passed, but we are still far, far from true equality and inclusion in this world. I don’t know how to fix it or make it better, but I feel called to help do that someday. I’ve made a start or two to “get my wheel in the door,” so to speak, but I’ve got a long way to go. So, when you see me or someone like me, please don’t assume I need you to validate my humanity by downplaying my disability. Nor do I need you to start believing the negative stereotypes that make people with disabilities seem helpless. Just get to know me — spina bifida, wheelchair, nerdiness, and all — and see that my life is not to be pitied – or something “inspiring” either! It’s just my life, one I want to live as freely and interdependently as I can. It hasn’t all been bad so far, and it wouldn’t be what it has been or will be down the road, if it weren’t for this speedster that helps me down that road — my wheelchair.

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My Experience Learning to Drive With a Physical Disability

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For many people their 17th birthday means more independence, and learning to drive is at the top of the list. For someone with a physical disability this is no different. For many people with physical disabilities, independence feels even more important; perhaps this is why I crave independence and strive to achieve my very best.
To learn to drive, the first thing I had to do was to apply for my provisional driving license. I filled in the form as usual, the only extra thing I had to do was visit my general practitioner who the driving license agency contacted for information about my condition.
When I got my provisional driving license I was advised by the driving license agency to have a driving assessment at one of their assessment centers. I knew that if I was told I couldn’t drive I would have to accept it, and as my condition doesn’t change, a no would be a permanent no. I remember feeling nervous but trying so hard to keep calm. A driving instructor and occupational therapist carried out the assessment, which included them talking to me about my disability, what movement I had, a startle reaction test and if I had any driving experience. I had some experience thanks to me dad letting me drive his car around a field.
After this, I was allowed to go for a drive; it was both even exciting and scary. I had a driving instructor, an occupational therapist and I asked my dad to come with me. I drove around the industrial estate; I had thought it would be an off road but no, I actually drove on a road. After some static practice of changing gears it was time to drive. I was told what to do by the instructor with the occupational therapist assessing if I could safety control the vehicle. I drove around, did some steering around posts, then it was time to go back for the debrief. I remember them staying that I should book some lessons. The recommendations were that I should try a few lessons to see how I managed. They also suggested an easy-release hand brake and a seat belt extension, although in my own car I do not have these as when nobody is watching me I can do the seat belt, and only have a problem with the hand brake if someone borrows my car.
As soon as the report arrived I booked my first lesson. The report recommended driving instructors; I chose one and stayed with the same person. To be honest, I didn’t really enjoy my first few driving lessons. There seemed to be so much to remember and do all at the same time. Some lessons I really enjoyed and felt like I was making progress; others I felt like I was never going to get it. However, the more lessons I had, the more I enjoyed them and the more confident I became.
After about a year or so I decided to buy my own car so I could get more practice. This really helped, although it can be difficult switching between two cars. After failing my second test and discussion with my instructor I decided to just drive my own car for all my lessons. I passed my test fourth time around on March 14, 2011. I don’t remember the whole test route. I had the option of having my instructor sit in the car; I didn’t do this on my first two test, but the next two I did. I think it’s good to have your instructor in the car, as if you don’t pass your driving instructor will know the areas you need to practice. The one thing I did differently was most instructors recommend a two-hour driving lesson first, but as my cerebral palsy means I use two to three times more energy, it was better to have a short practice and break before taking my test.
After passing my test I drove on my own as soon as possible. I started with short familiar routes, gradually building up my confidence. After about a year I changed my car. When I bought both of my cars, the most important aspect was the driving position. For me personally, I like to sit high. Only you can decide the best driving position for you, so try options until you feel comfortable. It’s difficult when you’re learning in an instructor’s car; you have to change the seat, steering wheel and mirrors. It can take a while to find the best setup, but remember when your have your own can you won’t have to keep changing it.
If you use a wheelchair or other walking aid, ensure you can easily fit your chair or walking aid in your vehicle. I bought the car then tried to find a chair to fit the car. I found one in the end, but I would carefully consider the size of the car if you use a walking aid or wheelchair. If you are in the U.K. and receive Disability Living Allowance or Personal Independence Payment, you can use part of your allowance to lease a car. For me it worked out better to buy my car and use my allowance to run the car.
I have now been driving for six years and I love the independence driving has given me. If you are reading this and have a physical disability, I would encourage you to take the first steps to getting on the road.

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Thinkstock photo by Wavebreak Media.
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