Empty cart in supermarket.

When Other Shoppers Take Advantage of My Disability

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Recently I had some experiences that were quite unpleasant while I was shopping. I am sure many of you who have limited mobility may have experienced the same things as me.

I was having a hard time with my breathing from my asthma, as well as being in considerable pain from my wonky knee. I have osteoarthritis in this knee, and it was very swollen and extremely painful. Walking was taking quite a bit of effort and I was relying heavily on my walking stick to get around. I needed my walking stick due to both my breathing and the pain in my knee. Movement was slow and difficult.

First, in one rather large shop, I bought some embroidery thread and made my way to the checkout queuing point. I was two steps away from the point where you queue when a lady, older than me but without apparent mobility problems dashed in front of me and went directly to the serving bench. To say that I was put out would be putting it mildly. She had quite a complex query and took ages, and I was struggling with the pain and effort to stand and wait. But what still amazes me is the apparent deliberate taking advantage of someone’s lack of mobility to push in. Was I overreacting? Did I have a right to feel miffed?

About an hour later I was carrying a basket with some strawberry plants to the checkout of a very large hardware store. I was really struggling with my walking stick, my bag and my shopping in a basket. I was in a lot of pain and wanted to get to the car to sit and wait as my husband still had a lot more shopping and looking to do.  And again, as I turned into the aisle at the empty checkout a middle-aged man rushed from the left hand side of me to the checkout in front of me. No queuing for him! I actually felt extremely affronted this time, but was not game to say anything.

I inwardly fumed as he paid for his goods. As I was paying for my strawberry plants, he interrupted with a demand about what he had been charged. This was really rude as I was being served and the poor person on the checkout had to stop, turn to him and answer the questions. He once again was pushing in to get his needs met despite the fact that I was being served. He didn’t use any manners such as “Excuse me…” He apparently just thought he had the right to take over.

He also kept his goods on the counter so I couldn’t put my plants down! I pushed his stuff across out of he way so I could put my plants into a box and that was the total limit of my resistance and ability to stand up for myself. I was left feeling like I just didn’t count. I was cross with myself for being such a wimp. Why can’t these people show a little consideration and patience? Why do they think they are more important than anyone else?

I felt really hard done by in both these situations. I was very frustrated. I also felt these two shoppers had really been ignorant and inconsiderate. Does this happen to everyone with a mobility issue? How do you deal with it? It’s like you don’t matter and you aren’t considered as equal or as deserving of respect. Your lack of mobility is a chance for these people to get ahead. I suppose it is a form of bullying. They seem to perceive you as someone of whom they can take advantage. Is it because you appear weaker?

Maybe I am wrong to feel such annoyance at these people. Maybe they are just so focused on themselves that they are oblivious to the difficulties of others. Maybe they have no empathy. Maybe it’s just the rush, rush, rush of modern life, so they think they have to be first. Maybe I expect too much of my fellow human beings. But these experiences have left me feeling rather jaded.

The best part of the day was when one of the shop assistants saw me struggling and stepped in and carried my strawberry plants for me to the lift and then to my car. This kindness, after the two other experiences, really made an impression on me. Some people are kind and will go out of their way to help you; others are selfish and take advantage of your limitations.

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To Australian MP Pauline Hanson, From a Student With a Disability

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It was a typical Wednesday night for me as a Year 12 student, Pauline. I was caught in clouds of notes and study as I seem to always be, these days. I was taking a quick break and scrolling through my Twitter when I saw this from the absolute legend that is Kurt Fearnley.

Heaven forbid, kids experience a full spectrum of life in the classroom. They may develop empathy or tolerance. Obviously lacking within PH. — Kurt Fearnley (@kurtfearnley) June 21, 2017

This made my heart stop for a second because that phrase “spectrum of life” sounded like it had a lot to do with kids like me.

I should now take this moment to introduce you to a few facts about my life because then you might understand why comments like yours aren’t easy to shake for me. As I said, I’m a Year 12 student, doing the highest level of English possible, juggling three major works and having been at the top of all my classes since Year 7. This set of facts is merely an attempt by me to set you up with the picture of a girl with a strong academic record and a thirst for knowledge. Oh, by the way… perhaps the most relevant fact, but by no means the most defining is that I have a disability. I am a 17 year old girl in a wheelchair; I have cerebral palsy.

I did a quick Google to find context for Kurt’s comment, as while I know he is a fierce advocate of our community’s rights, he seemed unusually fired up for what I had thought was a relatively quiet news day. To be honest, Pauline, when I found the cause of his comments, not only did I feel he was remarkably publicly calm and restrained, but I felt as though the air had actually been physically ripped from my lungs.

I wondered what on earth could have possessed you to make such a misinformed statement about the lives, intellects and aspirations of children with disabilities?

When I was born, the doctors gave my parents a deeply grim diagnosis and what seemed like an unsettling and dark future. They told them I would never walk, talk or feed myself, and would be a girl stripped of all independence whose bright sparks many people would fail to notice. A well-meaning individual asked my uncle if he thought my mum and dad would place me in a home or institution, because he probably couldn’t possibly fathom how he would find the strength needed to do what my parents have done without complaint, little reward and a vast amount of energy for just shy of 18 years.

That’s a big commitment, Pauline, as is the commitment to have any child. But for a child with a disability, disorder or other greatly life-impacting condition, there are often things no able-bodied person can comprehend until they’ve been directly affected. You don’t know the depth of mine or my loved one’s lives, which have involved dodging bullets of ableist discriminatory bigotry like the ones you so casually fired a few days ago in Parliament.

You made a point of claiming that kids with disabilities drag others down, and do not have a willingness to learn, nor should they do so in a mainstream classroom. I will say there are some individuals for whom mainstream life is not as easy nor is it particularly feasible, but you have to understand Pauline, these decisions are not made lightly nor are they made with the intention of hampering the lives of others.  Many people with disabilities want inclusion and have a grit to do whatever it takes for various definitions of success and happiness to be achieved.

You seem to have a habit of tarring people with the same brush and making generalizations that can be dangerous and damaging. I have seen you do it consistently over your years in the public eye, and I unfortunately have no doubt you will do so again. But you should know, autism and other disabilities or conditions do not have a one size fits all, standard appearance. The spectrum for autism in particular is wide-ranging. I have three questions:

Do you have an iPhone or any other Apple service/device?

Have you ever used a Windows computer?

Does the theory of relativity mean anything to you?

These questions are all linked by the common thread that the visionaries behind these creations which influence so much of society’s makeup in 2017 are rumored to have been at various places on the autism spectrum. So tell me, do you still feel like people with disabilities/conditions don’t want to learn? Do you still stand by your allegations that we drag others down? Your refusal to apologize despite this highly emotive response from MP Emma Husar tells me you do.

People with disabilities face so much stigma and complexity in terms of being seen, heard, felt and represented. Your comments as a representative of our nation’s government scream ignorance and a mindset lacking in empathy and compassion. I’m going to extend the olive branch (which I’m almost certain you’ll refuse) of being quite happy to educate you and show you the reality of my life, the personal importance I place on my education and the strength of my ambition. That goes for anyone who might be reading this. I’m not ashamed to be who I am, and I won’t let people who are discriminatory and misinformed or just plain nasty make me feel any differently!

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

Follow this journey on A Way With Words and Wheels.

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It's Time to Change the Conversation About Urinary Incontinence

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Hello, my name is Robert Sullivan. I am 34 years old, and I live with moderate to severe urinary incontinence, and occasional bowel incontinence. As of yet, I have not had a confirmed reason as to why I have this condition, other than my urologist telling me I have underactive neurogenic bladder, which means my bladder doesn’t always send me the signals telling me I’m full and I get the warning too late, or every now and then the nerves misfire and my bladder empties without warning.

I recently became very open about it, more open than my parents and others around me would like. It’s true that with my PDD-NOS (which is the old catch-all term which is now referred to as autism spectrum disorder in the DSM V), I may not always know what is a good time and place to bring up a particular topic, and my mom told me I should not go into detail about my bladder issues. Some people don’t like the idea of me being an incontinence advocate going around telling people I deal with incontinence. Society in general says shh! Don’t talk about it. We keep that in the bathroom. That’s private!

Well, I think that’s a bunch of crap (pun intended). Millions of individuals deal with incontinence, and they are of all ages, not just elderly people, and not just 40-somethings. I need adult diapers at age 34. I also have to cath four times a day because I also have retention. The stigma and private nature of this condition can leave a lot of people who deal with it feeling ashamed, isolated, and alone, and unwilling to see their doctor. Worse, it can make them feel ashamed, embarrassed and otherwise stigmatized about the use of absorbent products, when for many people whose incontinence cannot be cured (mine included), they are a fact of life. I now have no shame about my type of underwear. I applaud Depend’s recent campaign of underwareness, though I do think it’s somewhat misguided. It’s just pee and poop, people…we all do it. The bladder and bowel are just like any other part of your body. They can go wrong. Anyone can become incontinent regardless of age. A whole host of conditions can cause it. So we definitely need to change the conversation of incontinence from silence to “oh yeah, I deal with that too!” Folks need to feel not alone.

 

So you may ask, “Well, sure, we need to bring awareness, but other people are already doing this. Why do we need another article on incontinence?” Why am I doing this? Why, after several years of living with this condition and trying to hide like so many do, with society telling us we need to keep it a secret and not talk about it, am I breaking the mold and all the social rules? Why am I talking to strangers about a taboo and sensitive topic if they are willing to listen and not say “ohh TMI”? Simple: many people who deal with incontinence simply don’t know about quality products that can help manage even the most severe cases of incontinence far more effectively than certain nameless brands you might find on your local store shelf in the incontinence section. Many parents of children with disabilities struggle to find diapers that fit their children because they are too big for the biggest baby sizes but too small for the adult sizes…so where does that leave them? Many are dependent on Medicaid for their child’s supplies because they are on a tight budget, but sometimes Medicaid products are not of decent quality. I know this firsthand. Dealing with crappy diapers is the main reason I now mainly use pocket diapers.

I have decided to take matters in my own hands and found a nonprofit organization — an online diaper bank, pantry, and exchange program providing infant through adult sizes, both cloth and disposable of the highest quality to anyone who needs them regardless of Medicaid status or insurance. Quite simply, once I get established, all that will be necessary is a photo ID of the recipient and caregiver (if you are receiving diapers for a loved one you are caring for), and a letter from the recipient’s physician stating that yes indeed this individual has incontinence and is undergoing treatment for it. I used to have two separate categories: one being incontinent but otherwise not disabled and low-income, and those with incontinence and disabilities. But then I considered the cost of products, and then decided I will not consider income in regards to service. I may however ask for a very small cost share for those who can afford it and are willing to help pay for it. I also want to raise awareness and fight stigma. I am also going to start a fund for catheters for the uninsured or underinsured.

Another reason I’m breaking the mold is that I am fed up with the lack of concern over adequate bathroom facilities for those with disabilities who require the use of diapers. Imagine your son or daughter is disabled and incontinent. They need a diaper change, but the only place to change them is the floor of the bathroom. Would you want to change you infant son or daughter on the floor? I think not! But, that’s the reality of many families. I read an article on here about the public’s lack of concern over adequate facilities and I was shocked. Disability advocates have their work cut out for them. The general public is completely ignorant of the struggles families with disabilities face every day. Millions of incontinent individuals who are disabled need these facilities. It’s time for change!

So, in closing, it’s time to change the conversation, and how we view incontinence as a society. It’s the butt of jokes, but try living with it for a day and see if you are still laughing. Try coping with diaper rash and the pain it brings. And try understanding the effect it can have on self-esteem when it feels like your body betrays you. It’s not a laughing matter. But that being said, it helps for me to have a sense of humor when coping with it. But laugh with me, not at me. Please! Stop saying it’s a private matter and that only babies wear diapers. The hush-hush only makes those living with it feel worse.

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'Born This Way' Highlights Importance of Inclusive Education

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Lauren Appelbaum is the communications director of RespectAbility, a nonprofit organization fighting stigmas and advancing opportunities for people with disabilities.

In the U.S., schools were not required to provide special education until 1975. Today, the fight for inclusive education remains a constant battle for parents and students. “Born This Way,” a reality television show that stars seven diverse young adults with Down syndrome, shines the spotlight on the importance of inclusive education and the Individualized Education Program (IEP) process.

Ensuring children with disabilities receive the education and training they need to succeed is vitally important. Nationally, only 65 percent of students with disabilities graduate high school each year compared to 86 percent of student without disabilities. That means there is a 21-point gap in outcomes. Furthermore, only 7 percent of students with disabilities graduate college. As such, educators have a critical role to play in empowering more students with disabilities to succeed.

Teachers are important partners in the efforts to overcome bias, barriers and stigmas by promoting and implementing best practices in the classroom. In coordination with partners, RespectAbility has released a lengthy educational guide featuring resources to teach students about disability and assist students with disabilities to succeed, as well as recommended reading for both children and adults.

The upcoming episode of “Born This Way” on June 27, 2017 delves into the implementation of an IEP, which is integral for children with disabilities. An IEP is a formal plan for students who have been identified to need accommodations specific to their individual disability in the public school system. In addition to accommodations, the classroom can be tailored within a general classroom, a smaller group or one-on-one instruction.

Creating IEPs can be a daunting challenge for parents and often stressful as there is much to consider when determining the education of a child. “Born This Way” has highlighted the strenuous task of creating an IEP for the first time, but also shows the satisfaction of having one in place. Amy, the mother of new cast member Rocco, a child with Down syndrome, describes it as “an emotional rollercoaster” but she and her husband “believe that full inclusion is best for our son.”

Parents are integral to ensuring the IEP covers the needs of the student. An IEP meeting also will include general education teachers, an administrator, a special education teacher and potentially a psychologist. The first step in initiating the IEP process is through a Pre-Referral process where a student’s areas of opportunity are identified. The IEP determines goals for the child, as well as the child’s strengths, needs and performance level.

“Born This Way,” which recently won an Emmy for being the best reality show on TV today, is not an ordinary reality show. It stars seven diverse young adults with Down syndrome. During season 3, episodes have tackled complex issues such as self-determination for people with disabilities in healthcare choices, the lack of employment opportunities for all people with disabilities and sex education for young adults with developmental and intellectual disabilities.

The episode will air on Tuesday, June 27 at 10 PM ET/9c on A&E Network. Join RespectAbility as we live tweet using #BornThisWay.

RespectAbility Fellow Sneha Dave contributed research to this article.

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My Problem With the Word 'Inspiration' as a Person With a Disability

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To the people who use the word “inspiration” to describe people with disabilities,

“Larissa, you’re such an inspiration.” I have heard this for as long as I can remember from friends, teachers, etc. As much as I appreciate being called an inspiration by people who know me, it also bothers me a great deal when strangers or sometimes people I know say it all the time. Why me? Just because I am disabled, or because of my outlook on life and whatnot?

Here’s my problem with the word inspiration. People use it far too often to describe people with disabilities. I don’t know why; is it to make yourselves feel better? To me, being called an inspiration is like putting expectations on someone to be a person they can’t be all the time, because we are human. So instead of using the word inspiration to describe people with disabilities right off the bat, get to know the person — the good, the bad and everything in between. Because we are a lot more than just an inspiration.

Sincerely,

Larissa AKA not your inspiration

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To Pauline Hanson, From the Mother of a Child With Disabilities

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I dropped off my daughter Chiara to her kinder group this morning. It’s not a “special” school that caters for children with disabilities. In fact, it’s a mainstream environment where Chiara can experience life like any other toddler her age. This morning as I carried her into the room, she was greeted with a group of kids running up to her with excitement. “Ki-Ki is here,” “Hello Chiara,” “Yay, Chiara has arrived!” As I placed Chiara into her chair, these kids were hugging her and she was laughing with joy back.

I could see the beautiful exchange of human diversity, love and joy that expands past any physical or verbal limitations. I could see a group of young children who by the mere experience of sharing time with a child with neurodiverse needs, bring and gain gifts and insight. I see a room full of children who connect with Chiara. There are no concerns that Chiara cannot sit, walk, or talk. There are no concerns that their needs are not being met. There is no hierarchy between who should receive more education than the other. I see a room full of educators who include every child and provide each of them with the love, guidance and care they deserve. I see a room full of acceptance and understanding.

You won’t hear comments like Pauline Hanson’s: “We need to get rid of those people because you want everyone to feel good about themselves” in these parts. In fact, you won’t hear any of this bulls**t, because Hanson, this community doesn’t need to exclude others in order to feel good. That’s the thing about living an authentic human life. If there one thing that I have learned as a mother to a child with disabilities it is this: communities, families, friends and the world at large are far better off where there is inclusion and shared experiences of all people, whether asylum seekers, aboriginal culture or neurodiverse. They shine a light through fear, ignorance or greed, and bring us all to a deeper level of the human condition and the essence of compassion and love.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by OK Six.

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