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When People Dismiss My Fear of Losing Disability Services Under a Trump Presidency

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I have had to defend myself for what seems like all day over my hesitation about the future. I just want to state my case and be done with the election conversations for a while.

I am a person, first of all. I’m someone’s sister, daughter, niece, aunty and someone’s special somebody. I am not a leech or drain on resources. I appreciate all the help/resources I have been given by all the taxpayers, middle class etc. I know that my health care has been paid for on the backs of others, and don’t need to be reminded. I know also that my driving lessons and Associate’s Degree were paid for by people I will never have a chance to thank.

I truly tried to contribute in a wage-earning way to society. I went on interview after interview, but the door was constantly slammed in my face. I finally found a job (not in my field of study) but a job just the same, but my body told me “no” after only 90 days. Many of us with disabilities who don’t work would give anything to be even considered one of the working poor, let alone middle class.

The health care I receive is desperately needed, and I wouldn’t be here without it. I am trying and will continue to try to fix the things in me that are “changeable with hard work.” If I can get rid of some of these medical expenses by changing what I can to be healthier, I will do it. We aren’t sponges sucking America dry while we sit at home on our butts feeling sorry for ourselves. We are American citizens and deserve the same rights and respect as anyone else.

When I first moved out on my own, I didn’t have all the resources I have now. My first place didn’t even have a ramp to my front door. I have never once had to go live back home. I fought hard to live independently like the rest of my able-bodied classmates who were spreading their wings and leaving the nest. As my body aged, I needed more help and found out what was out there to make life a little less hard and painful. I can’t and won’t apologize for the need for more and different assistance as my body has aged and complications from surgeries made more assistance necessary.

We as disabled citizens are a unique group of the population. One of the major fears I’ve seen is that funding could be cut from programs that assist us with daily living skills. Imagine having decades of independence being taken away with the swipe of a pen. Imagine that someone who has never met you does a cost/benefit analysis of all the programs you receive help from and the cost to the taxpayers for you to stay at home versus institutionalization. That’s a very scary thought for most of us with disabilities and those who love us.

I want to be in control of my own destiny. I have had to prove to others my fitness to be able to live independently before, so please don’t say it can’t or won’t happen. I have a hard time believing in a president who seems to think it’s OK to openly mock his citizens for things we have no control over, whether it be disabilities, sexual orientation, race, etc. I would gladly give back all the money and services I receive from the government if I had a body that did what I asked it to do without excruciating pain.

I am grateful for what I have, and I know there are people are worse off than I am. Please think before you speak. Ask yourself: if the person you’re mocking or demeaning was instead one of your loved ones, would you want them to be treated like that? Don’t mock a person’s fears until you’ve walked in their shoes.

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4 Ways My Brother Is My 'Unsung Hero' as a Person With a Disability

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Siblings in the family of an individual with a disability sometimes get a rough deal. Routine hospital appointments, illnesses and various operations or interventions mean that the child with the disability, through no fault of their own, often gets more of their family’s time, attention and resources. Yet brothers and sisters regularly deal with these circumstances with outstanding grace and maturity.
I want to take this opportunity to pay homage to one of the unsung heroes in the life of a person with a disability. In my case, this happens to be my brother David.
Two years older than me, David and I have always had what you could call a “banterful” relationship. He teases me rotten and drives me nuts, but there are some things I am particularly grateful to him for…

1. He got me crawling. Mastering the art of crawling, standing, and walking was a particular challenge for me in my earlier years. But fortunately for me, my brother was on hand to help! Being a clever boy, David figured out that in my pre-crawling months he was able to steal a toy from me, shuffle back a meter or two, and be safe from my grasp as I could travel no further to reach him. After months of annoyance on my part, I decided that enough was enough and launched myself at him… much to his surprise. Apparently his face was a picture as I steamed towards him on all fours to reclaim my stolen toy! He’s been careful about stealing my stuff ever since…

2. He got me standing. After months of false starts, and many hours spent in a contraption called a “standing frame,” I finally managed the whole “being upright” thing thanks to David. Being the younger sibling meant that I was always interested in what my older brother was up to, and wanted to be at the center of the action with him. One evening David had disappeared for a bath, and I wanted to know where he was. The story goes that I crawled into the bathroom, looked around for him, heard his voice, grabbed the side of the bath and pulled myself up so that I could see David sitting naked in the bath. Again, another surprise for that poor boy!

Emily and her brother playing with the truck.
Emily and her brother playing with the truck.

3. He helped me to walk. When I was young, I had intensive physiotherapy courtesy of the NHS. I was visited regularly by a lovely physio, and my parents engaged in a daily routine of exercises to help build my muscle strength and tone. In one physio session, when I was around 3 and a half, I decided that enough was enough and it was time to try this walking malarkey. This of course was a great result for me and my family, especially as medical professionals had suggested this might not be possible for me. The ever-helpful David was, of course, determined to aid my mission to be vertical. He assisted me by acting as ballast in my toy brick truck, which I leaned on to give me support as I tottered around.

4. He turns up willingly in times of need. He’s always there when it matters most, providing hugs, brotherly advice and of course – food! David will call me out if I’m being silly, often telling me to “man up” and get on with it, but he’s always one of the first to give me a cuddle when things have been really bad. Whenever I need him, he is there and will move heaven and earth to support me.

In my final year at university, I developed sepsis and was admitted to hospital as an emergency. I felt incredibly unwell, and with my parents over 130 miles away in Norfolk, it was down to David to swoop in and save the day. Being the social butterfly that he is, his response, when I rang him at around 8:00 P.M. on a Saturday to tell him I was at the emergency room, was “Oh crap, do you need me to stop drinking?” Knowing that he was potentially going to be called in to swoop to my rescue, he finished his pint and remained on standby to hear what the next steps were. I was admitted to the ward later that evening and David arrived the next morning with chocolate buttons, Diet Coke and catheters – the essentials! What a legend.

Ladies and gentlemen, raise your glasses to our unsung heroes — our siblings!

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When a Tinder Date Wanted to 'Fix' My Spina Bifida

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The topic of love and relationships can be a delicate subject for anyone. But for someone with a disability, it can be particularly fraught and is often laden with many deep and dark “what ifs.”

Meeting the right someone is challenging in a day and age where people are so heavily consumed by their jobs and attached to social media that they forget to go out and enjoy themselves and the company of others in an environment free from the intrusion of technology. Rare are the days where people meet their future partner in pubs, libraries, cafes and parks. More commonly, my generation are meeting future partners via dating apps and internet websites. In a world where judgments on a person’s worth seem to be made within the first 30 seconds, having a pair of crutches, a walk similar to Pingu and often a wheelchair in tow can mean that the odds often feel stacked against you right from the offset.

That being said, in early 2014 I decided that if I can’t beat technology, I might as well join it. I was feeling settled and happy in my own skin, and I decided that it was time to take my first foray into the world of online dating. This is where our story picks up, and I will go on to share a few of the lessons I learned throughout this process while sharing a few of the funnier and more shocking experiences.

Lesson #1:  You will only be happy with someone when you are happy with yourself.

I began my online dating adventure with Plenty of Fish and Tinder and I must admit, it was an eye opener! Without wanting to sound arrogant, I was immediately quite popular and was enjoying the attention greatly. However, when it came to meeting up with people, I began to get nervous. When you meet someone in a bar or are introduced by friends, your prospective date is immediately aware of your disability and has the opportunity to decide in that moment if they want to continue with this particular interaction. When you meet someone online, unless your profile picture or blurb states that you are disabled or shows a crutch or wheelchair, there is a very significant piece of information yet to be shared with your prospective date.

Different people hold different opinions about how best to deal with this scenario. Broadly speaking, there are three options:

1) Don’t tell your date until you meet them in person.

This for me was not an option. Having been on the receiving end of that split second recoil and look of shock (followed by the awkward silence) when standing up and reaching for my crutches after having been chatted up at a bar, I feel this is a bad idea. Furthermore, I really do not feel that it would be fair to the guy that I was meeting, as it immediately puts him in an unfairly awkward situation. With me, what you see is what you get, and if I had not at least introduced the idea that I was a little bit “different” prior to meeting up, I think I would’ve have been doing both my date and myself a massive disservice.

2) Tell your date everything about your disability before you meet them.

This is something I tried early on in my online dating adventure and controversially I must admit that it was not my favorite option! When Googling “spina bifida” a plethora of information appears on your screen and in truth, paints a picture that is alarming and not true to my experiences. Although my spina bifida is severe, I manage to adapt many activities to be able to participate in some way, be it slightly modified or very modified. But, when presented only with the results of a Google search, it can be off-putting for an individual who knows no better! It certainly explains why all of a sudden a few matches I had made mysteriously disappeared right after “spina bifida” was mentioned.

That being said, the benefit of this option is that it provides an immediate way to exclude those individuals you really don’t want to meet. Sharing your disability status candidly with your potential date leaves you wide open to being asked a whole variety of questions ranging from the sensible to the downright weird: I have heard them all! The topic of disability can certainly bring out the weird folk. I have been asked everything from “do you wear splints and if so, do you wear them to bed?” to “can I help you catheterize?” *shudder* I can assure you those individuals were not privileged with my presence on a date!

3) Mention having a disability and warn your potential date that you will be arriving on crutches, but save the details for a face-to-face conversation.

This is by far my preferred option. Knowing my date is already aware that I have some sort of disability is reassuring, as I know I will not be faced with immediate shock! It avoids making the first 10 minutes of meeting even more awkward than they already would be, and allows me the opportunity to explain my condition to someone in person. Hopefully when someone meets me, they will realize that despite my disability, I have an awful lot to offer and can be quite good fun!

I can wholeheartedly vouch for the success of this option, with all guys I went on a date with telling me that they appreciated my honesty prior to meeting up, and if they were successful in securing a second date, telling me that Googling spina bifida is scary!

Lesson #2: Honesty is the best policy – no matter how scary.

Regardless of how you go about this initial disclosure (or lack of disclosure), the real fun and games begins when you start going out on dates with the individuals you have been talking to. This is where you start to get to know the person properly, and as with all people trying to find a significant other, get to know the nittier grittier aspects of a person’s character. I have been fortunate to meet some truly lovely guys who have been kind, gentle and funny, who although we were not meant to be, showed me a really good time and treated me kindly.

On the flip side, not all of my dates were so successful, and there is one particular series of dates coming to mind. I had met this individual on Tinder and trialed option three to good success. He asked sensible questions and reiterated his interest in meeting up and taking me for dinner. We met up, had a lovely dinner and arranged to meet up the following week.

On arriving at date two, alarm bells started to ring. He was asking me questions about how to “fix” spina bifida and whether I had pursued all avenues of medical treatment. I explained the congenital nature of my condition and the fact that it is permanent with no cure. He went quiet and we continued our date.

On meeting for date three, he was straight onto the topic of spina bifida. He explained that his parents were flying into the country in a few weeks and that he wanted to introduce me to them (which already freaked me out – slightly too soon!) He then continued to explain that he could not introduce me to his parents in my “current state” and proceeded to present me with a list of doctors for me to meet with. For one stunned moment, I wondered if I had entered into some sort of alternate reality and looked around to see if I was on a hidden camera show.

Unfortunately, this was not the case and before me was a very ignorant and naïve person. I calmly explained that this was not appropriate, and that I did not want to be with someone who wants to fix me and is embarrassed to introduce me to family and friends as I am. I then proceeded to pick up my water glass and throw its contents in his face! I never thought I would have that movie moment in my life, but it was too good an opportunity to miss! What makes me laugh to this day is that his list of doctors included a microbiologist, a gynecologist, an ophthalmologist and a dentist, none of whom could help me in any way!

As with all things in life, you take the good with the bad and I am so pleased to report that I have endured the bad and found the good with regards to the dating game. A few days before giving up on Tinder entirely, I matched with a guy called George. He was kind, funny, intelligent and not remotely creepy. I actually took option two and disclosed my disability (because I was in hospital at the time of talking and needed to explain why I couldn’t meet for a little while) and was met with concern purely regarding my current admission and interest into spina bifida’s impact on my life. He did not seem remotely put off, and two weeks later we met up for our first date. Ten months later we were engaged and 14 months later we moved in together!

Follow this  journey on The Girl With the Pearl Scooter.

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What I Didn't Know Before I Met My Daughter With Spina Bifida

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I read an article recently (My Child’s Disability is Not a Tragedy,) which threw me back to my daughter’s prenatal diagnosis of spina bifida when I was 20 weeks pregnant.

Here’s what I remembered: at that moment, I did believe it was a tragedy. It felt like a tragedy. It hurt. It was terrifying. I didn’t know if I could do it. I knew I still wanted her, but I was scared out of my mind. I was sad and blamed myself. I was hyper-aware of having a healthy pregnancy, took my vitamins, and followed all the rules, but how could it be anyone’s fault but mine? She was inside of me.

Lily playing ukulele.
Lily playing ukulele.

The 18 weeks between diagnosis and her being born were hard. Really hard. I only knew what I’d read, researched, and what doctors had told me. I could tell you the percentage likelihood she would need a shunt to treat hydrocephalus, and how many millimeters the ventricles in her brain were on ultrasound. I knew she had the lemon and banana signs to signify a Chiari II malformation, but that her cerebellum wasn’t herniated into her spinal column badly enough to qualify for prenatal surgery. I could rattle off which muscles in the body were impacted by a lumbar level lesion. I read medical studies and devoured data like a ravenous beast, obsessed about her measurements on every growth ultrasound. I met the doctors and surgeons who would take care of her, and knew step by step what would happen the day she was born, because I went to every appointment with a notebook and list of questions.

I knew all this and more, but I didn’t know her.

There is a huge difference between knowing information about a disability and knowing people with a disability.

I know her now, and she is definitely not a tragedy. She is spunky and full of life, and more resilient than anyone I’ve ever met.

Lily with her family.
Lily with her family.

She sings.
She dances.
She is hysterically funny.
She overflows with determination.
So many people have told me she inspires them personally.

People tell you that children with special needs are a gift. Before I had one, I didn’t understand how that could be true. Now, I get it. She has to work super hard for an incredibly long time to master skills that other kids figure out in a week, but she does it with the happiest attitude you could imagine. Her spirit radiates, and you can’t help but love her and be happy she is in your life.

When she was still an infant, I had a few experiences like the woman in the article. I had people tell me, with mournful expressions, how sad it was that she has this “thing” wrong with her. A few times, I had friends cry when I told them Lily was born with spina bifida. It felt odd to comfort these people, and to assure them that my girl is wonderful exactly as she is.

When these events happened, I was past the sadness. I knew her, and she was so far from a tragedy that it caught me off guard when people reacted this way. However, all they had was misinformation, and a false image in their mind of what it means to have a disability.

My challenge to you is to take time to get to know someone, or multiple someones with a disability. Grab an eraser and scrub out any images you have in your mind regarding what it means to be disabled. Open yourself up to fill that space with your experience.

Don’t be scared. Be excited. Your life will be richer, and you’ll learn a ton.

This article was originally published on AbilityHacker.com.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? Check out our Submit a Story page for more about our submission guidelines.

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How Earning a Black Belt in Karate Changed My Life With a Disability

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My name is Paul Brailer. I am 43 years old and was born with spina bifida. I am a 2nd Dan (degree) black belt from the Art of Karate in Barberton, Ohio and founder of Criptaedo, a non-profit organization working towards tax exempt status.

Self-confidence didn’t come easy for me. Growing up I was told what I should, couldn’t and can’t do by people who were trying to “protect” me from being hurt physically or emotionally. This led to low self-esteem and low self-image which followed me into adulthood.  As an adult, I would look for the approval of others whom I perceived as better and/or smarter than me.

Paul Brailer with his martial arts instructor.
Paul Brailer with his martial arts instructor.

It wasn’t until I started martial arts that my self-confidence grew because I wasn’t being “protected.” I had to earn my rank, and it was harder for me because I had to modify techniques. An example of my modifications is shown on the video. To go from 1st to 2nd degree black belt, the board break is 5 boards in 8 seconds or less — 3 with feet and 2 with hands. I had to come up with a way to break 5 boards in 8 seconds or less with just my arms. My belt wasn’t given to me just because I was disabled, like some other things in my life.

After earning my black belt, I realized the need for self-defense for the disabled. That is how Criptaedo got started. Martial arts has helped me with my self-esteem and has given me a platform to reach the disabled community. I have been a part of Abilities Expo and numerous other local events. My goal for Criptaedo is to partner with existing martial arts schools and teach them how to teach disabled people. I want to show the disability community that you don’t have to be a victim of violence — you can learn to defend yourself. Just because people tell you that you can’t do something, that doesn’t mean it’s true. You’ll never know until you try.

Learn more at Criptaedo’s Facebook page.

The Mighty is asking the following: What was one moment you received help in an unexpected or unorthodox way related to disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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What I Wish I Told the Stranger Who Pitied My Daughter for Using a Walker

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We were at the airport, coming back from a wonderful, week-long beach vacation with extended family. Having arrived early with our two young children in tow, we took it upon ourselves to try to keep them occupied and in a good mood for the flight back home. The airport was pretty empty, so it was the perfect opportunity for our almost 2-year-old, Adelaide, to practice walking with her walker. Adelaide has spina bifida and just started using a walker a month prior. Getting her to the point of walking with a walker has been no small feat, let me tell you.

toddler using walker at airport
Adelaide walking at the airport

For once, she happily agreed to go exploring with her walker, and I proudly walked next to her, pointing out the little airport shops and knick-knacks they sold. She stopped every so often to dance to the music playing over the speakers. People waved to her, and she smiled back at them. People complimented her, telling her what a good job she was doing, and I thanked them in return, swelling with pride.

When we made it back to our gate, she ditched her walker and crawled over to her brother to play with him. I sat down with my coffee. The man next to me, a stranger, leaned toward me and asked, “Why does she wear those things on her legs?”

“Her braces?” I replied, “Those are to help provide support and stability for when she walks.”

“Oh,” he replied, and went on to tell me that his daughter had something similar when she was young, but she didn’t need them anymore. “What does she have?” he asked, obviously referring to her disability.

I replied that she has spina bifida.

“Will she grow out of it?”  he asked.

“No. Spina bifida is permanent. You are either born with it or you aren’t. But that’s OK. She’s doing great,” I responded awkwardly, as I have never really had conversations with strangers about Adelaide’s disability.

“That’s a shame that she has to use that,” he responded, pointing to her walker. “I just hate to see someone so young struggle so much already in life.”

Struggle? Adelaide’s amazing ability to walk was a struggle? I was puzzled; that was not how we viewed it. Not even close. I didn’t really know how to respond to him. I guess it’s the first time I saw her from a stranger’s point of view. To us, her ability to walk is an achievement, not something to pity. We are very proud of her for that accomplishment, as we knew there could have been chance that she would have never been able to walk at all with her diagnosis. We are grateful she can use a walker, so unbelievably grateful.

young girl standing with a walker
Adelaide and her walker

The first time Adelaide’s therapist sent me a video of her using a walker while I was at work, I wept. Like shoulders heaving, face swelling, nose running kind of weeping. I guess you could say I “ugly cried.” It was the most beautiful thing I’d ever seen in my life. She’s gotten so much better in that one month of walking, too. When I see her use her walker, I see a child that is looking at her peers at eye level instead of looking up at them from crawling around on the ground. When she uses her walker, she doesn’t have to wear knee pads that need constant adjusting. When she uses her walker, I don’t have to wipe blood and dirt off her knees and hands. When she uses her walker, sometimes she announces her pride in herself as well: “I’m walking! I’m walking!” she will yell to us excitedly.

I wish I had the words at that moment to tell that man those things, but I was too caught off guard to express those thoughts. I wish I could have conveyed even the slightest amount of our pride in her accomplishment, because it’s been something we’ve worked diligently toward ever since she was born screaming and kicking her legs.

I suppose I will be better prepared next time. At least I hope I will be.

The Mighty is asking the following:  Tell us about a stranger’s comment about your (or a loved one’s) disability, disease or mental illness that has stuck with you for one reason or another. Why has it remained significant to you? Check out our Submit a Story page for more about our submission guidelines.

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