Sad little boy being hugged by his mother.

When Our Disability Attitudes Fail Us as Parents

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As parents of kids with disabilities, we want our children to be treated with dignity and respect. But what if we as parents don’t model that? I’m going to say something that I suspect will make a lot of people uncomfortable: sometimes we are the ones who treat our children in undignified ways. When I first realized I was guilty of this, it broke me.

Looking back at my own blog entries from years past, I can’t help but notice the language I used and the over-sharing of personal details about my children. It turns out that even as a parent, I need to look at my own disability attitudes. If I don’t give my children dignity and respect, how can I expect others to do that too? If I am to be a role model, what am I communicating about my children? I need to be ever mindful of how my unconscious biases and attitudes impact my children and their community.

In the last few years I’ve been learning about disability attitudes. Because I’m a parent of kids with disabilities, and because I’m aware of other people’s negative attitudes towards disability, I somehow thought I had no problems with my personal disability attitudes. Things changed for me when I got to know adults with disabilities and I began listening to what they had to say. I was not an expert on disability because of my kids, they were the experts because they were the ones who were disabled. A lesson that, quite honestly, was humbling for me.

I’ve confused my girls’ story with my story. I’ve felt entitled to share information about them because of how it made me feel. I’ve disclosed some details that, if shared about me, would make me embarrassed and hurt. I did it all in the name of reaching other parents in similar situations and offering hope and encouragement. It turns out I can still do that without compromising my children’s dignity and respect as human beings.

I parent a child with an intellectual disability, and it is easy for me to fall into the harmful and misinformed mindset that, “She doesn’t understand.” I must always assume she does understand, even if she’s not able to demonstrate it. Because I am operating under this assumption, my words and actions must guard her dignity accordingly. I do understand. And because I do, I have a responsibility to be the one who upholds her basic human dignity before others.

What will I communicate to someone who does not live my life? What mental picture am I planting in their minds when they interact with my child or someone with a similar disability?

My child gains nothing from my over-sharing; instead, she loses. She loses someone looking at her as an equal, she loses her dignity, she loses respect in a world that already struggles to see her as valuable and human.

I understand that if I were to publicly share about bathroom struggles, period issues, meltdowns or bad moments, I would be stripping my daughter of the dignity and respect she deserves. Those things are not for me to share. If they would be humiliating for me or for a typical peer, then because I value her and think of her as someone who deserves dignity and respect, those things need to stay private. If I have a question about those issues, if I need support from other parents, there are private forums or groups to do so.

I didn’t always understand this.

I still get confused and share their stories as if they were mine because of how I feel. But, it is not about me, or other parents, it is about my children. Do I share with their dignity and respect in mind?

I still make mistakes and share more than I need to. I probably still will, but I am learning.

If I want my kids to be treated with dignity and respect, I have to start by being an example. An example in the way I write, in the way I speak, in the way I advocate.

I want my writing to reflect how precious my children are, how much I love them, how much they enrich my life.

I want the hope and encouragement to come from a place of dignity and respect for my kids while I acknowledge our struggles as parents. It is possible, and I believe that type of sharing is more powerful than giving personal details about meltdowns or a list of diagnoses.

I want, above all, to know that when my kids read my words or hear me speak, they’ll know they are safe, because I respect them and treasure their feelings and their dignity.

Always presume competence. As parents, we would do well to take that to heart.

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Thinkstock photo by SJenner13.

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Why I'm Grateful for My Children's Hospital Experience as a Young Adult With a Disability

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I never thought I’d say that I’d come to love a hospital. I never thought I’d say I would want to go back to this hospital. I never thought I’d say I’m glad to have the experience of going to this hospital.

Great Ormond Street Hospital for Children (GOSH) is a world renowned hospital who care for sick children and help families cope with the stressful time of seeing their child ill. While I was able to see the amazing work the staff did while I was a patient, after being discharged and transferred to adult services I was able to see just how special this was.

Yes, I complained a lot. Yes, I spent a lot of time in tears. Yes, I swore to my mum I was never going back after each appointment. But my life was saved here. However much I shouted and cried at the staff, there were also times where we laughed, joked around, went on adventures round the hospital and set pranks on other staff members. Most importantly, no one gave up on me. Each treatment, each test, each procedure. All to help me get better.

I was referred to GOSH after a knee injury that never healed. I was sent to the pain management clinic where I was taught to manage my pain through medicines, pacing and physiotherapy. I attended groups and had psychological intervention; but my medical team remained clueless about the underlying cause of my pain. Following this, I was referred to rheumatology where my consultant was intrigued by my case. “A medical mystery.” I was immediately admitted to a ward for a series of investigations to find the cause. Yet after a week of tests, there was still no diagnosis. I’ve had every test in the book and three operations, yet there was no way my team could find to cure the pain I was in.

To this day, my pain is debilitating. I wake up in the morning unable to move. I limp down the stairs, feeling so sick I don’t want to eat. I force myself to try to do the activities my friends do, only to end up in pain and in tears at the end of the day. I’ve learned to accept my pain and manage it through the technique of pacing, but all I really want is for the pain to go away. It swallows my body, taking each part of it. It hurts to breathe. Sometimes I wonder if my body is just going to give up on me.

Even though the medical investigations that I had done came back with normal results, my team at GOSH never gave up. They always kept trying. Many people from outside the hospital told me I was making up the pain; I questioned why anyone would want this pain. I wouldn’t wish this on anybody.

The day I got a name for my condition was the best / worst day of my life. I had finally, after five years of darkness, been told the cause. My nervous system wasn’t able to regulate controls in my body like heart rate, blood pressure, fatigue and sensory simulation. It all made sense. The mystery was solved. But my mystery was incurable. Something which was never going to go away. I was going to be in pain for the whole of my life. And then I read it shortened my life expectancy.

The whole environment of GOSH made me love it. The reassuring staff who told me I was better than my pain, and to never let it stop me and also not to believe what I read up online. The doctors who research and investigate different treatments to try on me. The nurses who sat with me when I felt so lonely and scared; the ones who would help with my homework and do arts and crafts and do the can-can round the ward screaming at the tops of our voices. The crash team who rushed to help me when I collapsed in the corridor. The other patients I spent hours with playing Monopoly and Mario Cart. Sleepovers in each other’s rooms. The paintings of animals on the walls. GOSH doesn’t really feel like a hospital anymore to me. It is a safe place where I feel welcomed by warm and smiling faces.

No one wants to have to go to hospital, whether it is for themselves or to visit a loved one. But I want to go back to GOSH. Now that I’m 18 I had to be referred to adult services, however, I want to help. I want to give back something to a place that has improved my quality of life significantly. Therefore, I have joined the young people’s forum to help teenagers who are in a similar situation to what I experienced. I want people to know that not all hospitals have to be horrible places. GOSH is a loving, caring, safe environment. Every hospital should have this feeling.

People often ask me what my life would be like if I didn’t have the pain and health issues. Yeah, I might be able to run around, go out more with my friends, not have to worry that I’m overdoing it, not have to take medicine, get the chance to think about things that other teenagers think of, not have to admit I have a disability to university. But truthfully, I think it’s made me a different, better person. I have become more compassionate and able to understand others experiences. I have taken up new sports I previously wouldn’t have tried. I’ve made new friends at hospital. I was still able to sit my exams in hospital and go out with my friends. I have been through a lot, but I’m resilient and able to cope with many more situations than before. I’ve got battle scars and each one is kind of like a memory. I’m prepared for the future and I owe that to GOSH.

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Thinkstock photo by 1st Gallery.

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To the Man Who Judged Me for Using a Disabled Parking Space

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I have a registered disabled parking permit, and I use it often. More often than I would prefer to, actually. As a young person with an invisible disability, it is very difficult for others to fathom that I do require an accessible parking spot and am not merely abusing my parent’s or grandparent’s permit. I am often victim to disapproving and judgmental stares as I step out of my car and a physical disability is not visible. I am met with the same reaction even on days I am limping or walking slowly. But it was not until today that I was actually verbally abused for rightfully using a disabled parking space. 

I entered the bank shortly after parking my car in my designated spot. Upon entering the bank, this middle-aged man kept staring at me and mumbling to himself while shaking his head. I was unaware of the fact that he was mumbling at me, and went on with my errand. Eventually, he turned around to me and mumbled a little more loudly this time, “It’s none of my business… but handicap parking? Are you serious?” He didn’t address me, or indicate that he was intending to start a conversation. He just started yelling things into thin air.

My reaction was that of confusion, disgust, and just more confusion. Feeling a little thrown off, I replied with, “Yes, why? What?”

He continued to shake his head and repeated his sentiments, but this time adding, “That’s immoral. You’re immoral. Are you serious?” He was visibly so appalled when I confirmed I parked in a disabled spot, and kept rambling louder as he walked towards me,  until he eventually walked out the door as other people began to walk into the bank.

I was horrified that he believed it was OK to judge and verbally abuse someone before he got his facts right. I understand if, as a good Samaritan, you are against individuals abusing the disabled parking space by using a permit that is not their own. I also understand if you feel the need to go up to someone and ask them if they are a registered permit holder, or contact security or the police to enforce the law. I empathize with the fact that you may have pent up frustration from a past event where someone close to you desperately needed to use a disabled parking space and someone was misusing it. I get it. Trust me, I get it. What I don’t understand is how can you judge someone and yell at them for something you know nothing about?

It is immoral of you to automatically assume I am abusing power because of the way I look. It is immoral of you to start berating me without obtaining any information beforehand. In fact, I am not obligated to prove to you that I require a disabled parking spot. My disability is personal and I don’t need to prove it to you, but since I do understand the sentiment behind the request, I will oblige out of the goodness of my heart. It is immoral of you to believe I live a privileged life because of the way I look, or the car I drive (my parent’s car). I do not owe you an explanation as to why I used the parking permit, but I hope this helps shape your view for the next time you feel the need to yell at someone else or redirect your personal frustrations.

Today was a day I really needed that parking spot. I woke up with a piercing headache and bloodshot eyes after three hours of sleep. I had already visited three medical clinics by 1 p.m., and was on my way to the pharmacy to pick up medications to get me through the rest of the day, week and month. I spent a good five minutes sitting in the car after parking to make sure I could gather enough energy and mental strength to walk to the bank and carry on a conversation with a representative. I did not need to be met with a random stranger yelling at me. Do you know what that does? It causes me to expend extra physical, mental and emotional energy to assess the situation, to understand why it is happening, and to analyze whether this is a fight worth fighting. You just cost me my energy for the rest of the week. 

So to the man who judged my parking space, I hope you read this and learn that your behavior was not OK. It was hypocritical and judgmental. In fact, it was immoral. To those of you who do abuse someone else’s disabled parking permit, please stop. Your actions have consequences. To those of you who tell me this is the way of the world, and people will judge you — that is not OK. That is enabling their behavior. Please raise awareness regarding the prevalence of discrimination against those with invisible disabilities, so we no longer have to accept that that is just the way the world works.

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Thinkstock photo by 1st Gallery.

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To the Teacher Who Encouraged Me as a Student With a Disability

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Dear Ms. T,

I don’t know if you remember me, but I definitely remember you. You were my seventh grade Social Studies teacher and were also one of the teachers supervising my Work Study period in both seventh and eighth grade. Two years later, I don’t remember much from seventh grade, but I do remember one thing quite clearly: I remember how strongly you’ve impacted my life.

I remember about a week or two into school, I still hadn’t brought in a binder for your class and I was keeping everything in a folder. You didn’t know that was because the beginning of the school year is always overwhelming for me because of my disability, which you also didn’t know about yet. You asked me to stay after class, then took a binder out of your closet, put all my stuff in it, then gave it to me. I remember I was still scared of you at the time, and I probably whimpered a “thank you” before running out of the classroom.

I remember a couple of days before we wrote our first essay, I told you I had a disability and I have typing accommodations. I think it might have been one of the first times I had to tell a teacher about my accommodations since typing accommodations were written into my IEP at the end of sixth grade. I was probably very visibly nervous: my eyes glued to the floor, my shoulders and arms tense, my legs shaking. I don’t remember exactly what I said, probably something along the lines of “I have a condition that makes my hands hurt when I write a lot, so for the essay, I need to type.” Knowing me, I probably mumbled or even whispered it. You then said “OK” with a look that said, “Why the heck are you so freaked out about this?” I reminded you again the day of the essay, and you said you remembered, then pointed to where the computer was and treated me like every other kid in that classroom. I remember crying from relief, both after I told you I need to type and after the essay.

I remember I was sick for nearly a week at one point in the year. I might have had a cold, I might have had pneumonia, I can’t exactly recall. Most of my teachers shoved work in my face and gave me a due date for all of it, usually no more than one to two days later. You didn’t. You asked me the next day I’d be able to stay after school, and I said I already planned on staying after to do makeup work in the library that afternoon. You then said you’d stay after that day to help catch me up and to let me take a quiz I missed so I wouldn’t have to miss lunch. You stayed late that day for me, just to help me out.

That afternoon you asked me what I want to be when I grow up. I told you I want to be a doctor, and you told me I’m so smart, I could definitely be a doctor. You also joked that I already had the handwriting. I was so stressed out that entire day; this was one of the few times I smiled and laughed. I remember walking home from the late-bus stop, with the pressure of an entire class’s worth of work taken off of my shoulders, knowing a teacher cared about me enough to stay after school just for me.

I remember reminding you about my typing accommodations the day of the in-class part of the final, which included an essay. Of course you remembered. You set me up on the computer, then handed out the final. Later that period, another boy needed a pen. I offered to give him one of mine, but you yelled at me to “shut up.” I know now that you were probably stressed out (what teacher wouldn’t be during finals season?) but since I was also stressed, I took it personally and started crying. It was silently, most people didn’t notice, but you did. Then you did something no teacher had done to me before: you apologized. You sucked up your pride and admitted you were wrong. You then helped me calm down, so I didn’t lose that much time to take the final. You’re the only teacher ever to apologize to me, and I mean ever.

I remember the last day of school. You asked us all to say something we’ve improved on that year. When it came time for my turn, I said I didn’t forget or lose as many homework assignments this year as I had the year before and I was proud of myself for that. You said you were proud of me as well and that you could see I got better at my organizational skills. You also said I needed to have confidence and that you knew I’d grow up to do amazing things. You then asked the rest of the class if they agreed with you. Nearly everyone raised their hands. I remember going home that day having more self-esteem, self-confidence, and self-love than I’ve had in awhile, if not ever.

Ms. T, I don’t know if you remember me or if I’ve touched your life. But I remember, crystal clear, how you’ve touched my life. I remember you.

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Thinkstock photo by Tab1962.

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Portland Launches Adaptive Biketown, an Accessible Bike-Share Program

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Portland, Oregon is expanding its popular Nike-sponsored Biketown program, a year after its initial launch, to include disability-friendly options. According to the Portland Bureau of Transportation (PBOT), the new program, called “Adaptive Biketown,” is the nation’s first city-sponsored program for riders with disabilities.

Portland began considering an adaptive form of Biketown last year at the urging of then-candidate City Council Member Chloe Eudaly, whose son lives with cerebral palsy.

At first, officials of the initial advisory committee didn’t understand what creating an adaptive bike service entailed. “The first time they wanted to speak to us, they were like, ‘Give us a list of disabilities, and give us a list of the bikes that work for them,’” said Jennifer Wilde, who works with a nonprofit assisting people with disabilities told the Los Angeles Times. “And that’s just not the way it works in the world of disability, because there’s just so much diversity.”

In creating the bike share program, PBOT interviewed and surveyed people living with disabilities and established a public work group to advise the program’s development.

“When Biketown launched, I was disappointed that there weren’t bikes for me,” Jeremy Robbins, a member of PBOT’s Adaptive Bicycle Pilot Project Work Group, said in a statement for PBOT. “Working with PBOT and others on developing Adaptive BIKETOWN has been very rewarding. I’m very excited for the launch of this historic project.”

While its parent program was originally intended for commuters, Adaptive Biketown is geared towards recreation and exercise. The service offers a variety of disability-friendly hand cycles, foot cycles and multi-person cycles for rental. Those interested in renting a bike can make a reservation by completing a rider profile and arriving fifteen minutes before a scheduled rental for a bike fitting process. Adaptive Biketown services also include helmets, mobility device storage and crate storage for service animals.

Adaptive Biketown is shaping up to be both an environmentally friendly initiative as well as an affordable one. It is not uncommon for children’s adaptive bikes to cost several hundred dollars while adult adaptive bikes can cost several thousand. However, Adaptive Biketown offers rentals for as low as $5 an hour for hand cycles, foot cycles and multi-rider bikes.

Portland’s adaptive bike share will be run as a pilot program this fall, and will use user feedback to expand in 2018.

Header credit: City of Portland

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Microsoft Will Feature Eye-Tracking Software on Windows 10

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On Tuesday, Microsoft announced a new initiative to make its products more accessible to those living with disabilities. The tech-giant is currently testing a new eye-tracking software which will be integrated into Windows 10.

The feature, simply called “Eye Control,” will utilize Tobii’s Eye Tracker 4C technology, allowing users to interact with their devices through eye movements.

Eye Control began in 2014 at Microsoft’s One Week Hackathon, an event where employees are encouraged to pursue passion projects and innovative ideas. There, former NFL player Steve Gleason, who lives with ALS, challenged software engineers to craft technology that addresses constraints he faces as someone living with a physical disability. Gleason wanted to play with his son and communicate with his wife more easily — everyday activities made difficult by his condition and gaps in disability-friendly technology.

According to iMotions, current low-end laptop compatible eye-trackers can cost between $100 to $1,000, while high-end trackers reach upwards of $10,000. Eye Control, on the other hand, will be available across all devices as part of Microsoft’s Windows 10 operating system. The software will allow users with disabilities to operate an on-screen mouse, keyboard and text-to-speech features using only their eyes

“Bringing Eye Control to Windows 10 will empower people using just their eyes to utilize Windows features.” Jenny Lay-Flurrie, Microsoft’s chief accessibility officer, told The Mighty “We are incredibly grateful for the partnership with the ALS (amyotrophic lateral sclerosis) and MND (motor neuron disease) communities for their active engagement and feedback throughout the development cycle. We look forward to our ongoing collaboration to further develop these features in future releases as we continue on our mission to empower people to achieve more.”

Eye Control is currently in beta. Those interested in early testing and feedback can sign up to be a Windows Insider.

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