Wheelchair going off-roading.

What My Wheelchair Has Done for Me

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Wheelchairs are very expensive pieces of equipment. My first privately owned chair came to almost £2500 and my most recent one added up to £3800. To some, these figures may come as a surprise but to others, it’s nothing new.

My wheelchair became my legs at around the age of 7. It gave me the independence my legs failed to provide me with. Today, it provides me with the independence I’ve always dreamed of. It gets me out of the house, transports me around my university campus and whizzes me up and down the basketball court.

Who’d have thought four wheels could make the world of difference in someone’s life? What can a chair do for someone?

My wheelchair has supported me through the happiest of times as well as the darkest of times.

My wheelchair has helped me to collect awards.

Soaking up the sun in Barcelona.
Soaking up the sun in Barcelona.

My wheelchair has kept me stable when making public speeches and lectures.

My wheelchair has guided me over long grass, bumpy pavements and wet sludge to enable me to complete the Race for Life.

My wheelchair has helped me to play snooker and pool… and on rare occasions, helped me to win!

My wheelchair has kept me upright when I’ve been out at parties, when maybe I should have been on the floor.

My wheelchair has helped me get to lectures and kept me comfortable.

My wheelchair has helped me to navigate in between the mass of slow walkers.

My wheelchair has taken me up hills and launched me back down them too.

My wheelchair has helped travel up 13 floors of a hotel.

My wheelchair has gotten me into an airplane and back out again.

My wheelchair has taken me to some of the most beautiful countries in the world, glided me over the sand and sat with me in the sea.

My wheelchair has gotten me up and down curbs.

My wheelchair has helped me dance on the dance floor.

My wheelchair has helped me provide the children in my care with a positive perspective of disability.

My wheelchair has shoved me down steps.

My wheelchair has gone through streams at my local park.

My wheelchair has gotten me stuck in the mud.

My wheelchair has left some amazing tire tracks in the glistening snow.

My wheelchair has helped me get out of some dangerous situations.

My wheelchair has transported me down to operating rooms and back again.

My wheelchair has taken me from one end of the basketball court to the other.

My wheelchair has whizzed me around the children’s classrooms when supporting them with their English lessons.

My wheelchair has enabled me to join in during physical education lessons.

My wheelchair has reminded me in times of self-doubt that I can do it.

My wheelchair has experienced the wonderful times, the scary times, the hurtful times, the joyful times and the saddest of times.

My wheelchair has never let me down… well, almost never. We’re a double act.

I can only ever rely on my wheelchair to get me through this life… so to me, my chair is my world.

I may go through quite a few of them in my lifetime, but each one will come on a personal journey with me. Let’s make it a memorable one.

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Livi Rae Lingerie Refuses to Take Down Ads Featuring Disabled and Plus-Sized Models

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Livi Rae Lingerie, a lingerie company in Kennesaw, Georgia, is fighting back after it was told to remove its storefront ads which feature a model with a disability as well as plus-sized models. The company, which is know for its diversity, sells products for a variety of different body types including those who have had mastectomies as well as those with prosthetics and other disabilities.

The store’s current ad features Stacey Shortley, a model with multiple sclerosis who uses a wheelchair; Tisa Edge, an African-American model and plus-size models Marie Layne and Bubble Bordeaux.

On Monday, the company shared a post to its Facebook page stating, “Our landlord’s told us to take down our latest campaign off of our windows because they deemed it ‘in bad taste.’ There’s not a thing wrong with our windows and we’re fighting to keep them up!”

To help get the word out, Livi Rae Lingerie invited followers to show their support using the hashtag #NoShameLivirae. “We’ve never had to clear an ad with the management property in the past. We were told that the ad is in ‘poor taste,’ but no one has explained what that means,” co-owner Cynthia Decker told Yahoo Style

 

 

 

 

“We absolutely are not taking down our windows. We poured out our heart and souls along side these everyday women who bared their bodies to help women feel better about themselves,” the store’s other owner, Molly Hopkins told The Independent.

Customers and fans shared the company’s sentiment, sharing its hashtag on social media.

 

 

 

Thanks to an “overwhelming response from customers and fans,” Livi Rae Lingerie announced its management company is letting it keep its ad campaign.

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Boy holding sign that reads "No one should lie on a toilet floor."

Why I'm Campaigning for Changing Places Toilets During Disability Awareness Month

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March 10-12, 2017 marks Disabled Access Day in the U.K., and March is Disability Awareness Month in the U.S. It’s a great opportunity to shout about all the great accessible places we know and love, but it also gives us a platform to highlight all the problems the disabled community faces because of inaccessibility.

The Cambridge Dictionary defines inclusion as meaning “everyone should be able to use the same facilities, take part in the same activities, and enjoy the same experiences, including people who have a disability or other disadvantage.

Without accessibility, there is quite simply no inclusion.

Until I became a mother to a disabled child, accessibility wasn’t something I really thought of much. This isn’t something I’m proud of. In fact I’m quite ashamed. It just didn’t cross my mind because I never had to deal with it. A classic case of ignorance is bliss. But there are so many issues disabled people and carers face because of lack of access.

One issue that affects my family is a lack of accessible toilets, so I campaign for Changing Places toilets. For those who don’t know, a Changing Places toilet is slightly larger than a typical disabled toilet with an adult-sized changing bench and a hoist. My 5-year-old son Brody is still in diapers, and there is never anywhere I can safely change him when we are out now that he is too big for a baby changing table.

In Scotland where I live, a wonderful charity called PAMIS forms part of the Changing Places consortium. Thanks to PAMIS, campaigners around the country and of course mindful businesses who understand the importance of social inclusion, there are now 144 Changing Places in Scotland. And there are 938 in the UK in total.

However, while this is great, we need a lot more.

So on Disabled Access Day, I’d like to educate and make you aware of some typical scenarios faced by disabled people and their families simply because of a lack of Changing Places toilets.

  • Loved ones changed on unhygienic toilet floors because there simply isn’t any other option.
  • Children changed in cold and uncomfortable car boots (trunks) in front of passers-by, stripped of their dignity.
  • Families leaving days out together because there is no fully accessible toilet facility.
  • Children missing developmental opportunities to become toilet trained because they can’t use a toilet when they are outside of their home as they require one with a hoist.
  • Disabled people avoiding places – the supermarket, their local shopping center, parks, places of interest – and staying at home because they cannot go to the toilet in a safe and dignified manner.
  • Children missing out on play and learning opportunities that other children can access purely because there is no toilet suitable for them.
  • Disabled people avoiding drinking while going out so they do not need to go to the toilet, risking dehydration and urinary infections.
  • Disabled people medicating themselves in order to prevent needing to go to the toilet while waiting at hospital appointments (many hospitals don’t even include Changing Places).
  • Disabled people who can use a toilet with a hoist needing to wear a diaper/adult pads because there are no hoist-assisted toilets.
  • Children with feeding tubes and tracheostomies, which are supposed to be kept clean, being changed in unhygienic places.
  • People who intermittently catheterize having to do so in unhygienic places when ideally they should be done in as sterile an environment as possible in order to minimize the risk of urinary infections.
  • Disabled people being put at risk of pressure ulcers due to a lack of hoisting equipment.
  • Risk of significant injury to the disabled person if they are dropped by their parent or carer.
    Parents and carers sustaining back injuries due to moving a disabled person to change them or lift them onto a toilet without a hoist.

That’s a big list, isn’t it? All because of just one accessibility issue faced by families like mine.

While we listen to politicians and businesses boast about social inclusion, it simply doesn’t exist without these facilities.

I won’t give up campaigning for my child to have the basic human right of access to a toilet when we’re out and about. Why should he be excluded? Why shouldn’t our family be welcomed everywhere like all other families? But I must admit I find it draining.

I appreciate that it is not possible for smaller businesses to have these facilities, and sometimes it may just not be practical. But there is no reason why big organizations, like shopping centers, supermarkets, theme parks, airports and train stations shouldn’t have them.

The truth of the matter is that there is a cost to my child’s inclusion and a cost to his dignity. And there shouldn’t be.

It’s sad that in 2017, inclusion and dignity is something we still have to fight for.

Learn more at Changing Places.

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What My Fellow Teacher Didn't Know About Parents With Disabilities

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We just ended another round of parent conferences in my school district. It’s just another day in the life of a teacher, right? After 16 years of them, I have gotten into the habit of reflecting back on some of the more memorable ones. The ones that have been difficult where the parent and I fail to see eye to eye, I try to learn from. The ones I am most proud of — most proud of the way the parents responded, I try to share and show my pride in the parents. Early in my career though, a conference that was a point of pride for me turned into a disappointment for the reaction I got when I shared the experience with a colleague.

The parents I had just had a meeting with were easy to talk to and open. Having had some interactions with the mom before, I expected this from her. I enjoyed her also because she allowed me to dream for my students. She had an intellectual disability. She was raising two young daughters and was involved in their schooling. She never missed meetings, and whenever I suggested something to help her daughter, I soon saw evidence that she was trying. I knew she had help at home. She had managed to connect with an agency that provided her with a “coach” of sorts. This person frequently came with her to meetings. She never took over the meetings, but listened carefully to our conversation and later helped the mother follow through with what we had decided. I saw evidence that it worked — her daughter was one of the highest-achieving students in my class.

I met the husband and admired their palpable mutual respect for each other. She led the meeting and even translated for him at times, as his English was limited. They spoke in respectful tones to me and each other, asking thoughtful questions and making valid contributions. It was obvious they loved each other and loved their children.

The next day in the teacher’s lounge, as we were sharing stories of our students and families, I started in on how proud I was of this particular couple. I started to explain why, but I didn’t get any farther than mentioning that the mom had an (unspecified) disability when one of my colleagues burst out saying “Why did no one have her tubes tied?” I was stunned. I felt a lump in my throat and left the conversation, quietly saying I did not agree with her.

After I got over the shock of hearing those words and forgave myself for not addressing the issue, I grew to understand that she just didn’t know.

She didn’t know that the basic human right to have (or not have) children was often denied people with disabilities in the early 1900’s through forced sterilizations.

She didn’t realize people with disabilities can learn to take care of a child no matter what their achievement in school, mobility or physical conditions — just like able-bodied people can learn.

She didn’t know the proper training or support for people with disabilities is available, if needed, so they can give their children the love and support to thrive.

She didn’t acknowledge that while people with disabilities may need help to be successful parents — so do able-bodied parents.

She didn’t know I had a disability and wanted more than anything to have a family. I was mortified to think that strangers wanted and potentially could make that decision for me based on my disability rather than my ability.

Lastly, she didn’t know my husband and I were trying to adopt. Not because I couldn’t conceive because of my disability, or because we were afraid of having a child with my disability. We simply wanted a family, and felt we had a lot to offer in terms of love and experiences — including my experience with disability — and felt adoption was the best way to become a family.

I missed the opportunity to say these things to that colleague. My hope now is that we all realize and respect that we can have the same desires, whether we have a disability or not. We all deserve the right to live the life that fulfills us. It is part of what makes us all human.

If you want to follow my family’s journey to adopt, you can visit our Web page.

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Mom Writes 'Mouse Ears for Everyone,' a Disney Guidebook for Visitors With Disabilities

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There are dozens of different Disney guidebooks – guides for kids, dining, saving money and even guides for runners – but before Amy Schinner’s “Mouse Ears for Everyone,” there were no guides for families with disabilities.

Schinner, a former Disney employee and mother to two children, including a son with autism, was shocked by the lack of guides and information available for families with disabilities. “After I searched online and still didn’t find the information, I decided I need to write this book and help get this information out for families that want and need it,” Schinner told The Mighty. “So basically, I was frustrated that yet again our community wasn’t represented and decided this was something I could fix.”

Schinner’s guide, which originally began as a guide for families with autism, covers most aspects of disability including developmental delays, sensory issues, mobility challenges, food allergies, service animals, hearing impairments, and other medical needs. To gather information for the book, Schinner used her experience from 25 trips to Disney, as well as interviews with families, Disney employees and Disney cast members. For the topics she might be missing, Schinner invites others to send her feedback through the “Mouse Ears for Everyone” website.

“Disney is accessible, but not all aspects are accessibly friendly,” Schinner explained. “For example, some queues aren’t wide enough for [electric conveyance vehicles] so you need to transfer to a traditional wheelchair that they supply. There are attractions you need to lift family members into, but there are also rides that don’t require you to transfer out of your chair at all.”

As for resorts, Schinner said some are more accessible than others. “For example, I love the Caribbean Resort for the pool and access to busses, and if you were looking at a deluxe resort I would recommend you not choose Disney’s Boardwalk.”

For parents who feel Disney might not be accessible enough for their family, Schinner says it’s possible to adjust your trip to fit your child’s needs. “Every little thing might not be perfect, but it will be magical,” she said. “It will require a little more prep and probably a set of [noise-cancelling] headphones, but Disney has world-class customer service, and it’s their priority to meet everyone’s needs.”

Schinner recommends preparing kids by showing them videos of the attractions, resorts and parks ahead of time. “This will help them understand that Mickey is not the size of a normal mouse and rides can be dark,” she added.

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When I'm Respected as a Professional but Not as a Patient

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I find myself in an unusual and confusing position.  I have a disability which involves chronic pain, fatigue, and limited mobility. I therefore spend a lot of my time as a “patient” at clinic appointments, having occasional inpatient stays, and spending what feels like hours sitting in hospital waiting rooms waiting for my name to be called.

However, I am also lucky enough to work part time as a specialist teacher assisting children with a wide range of complex disabilities. I give advice to schools, parents, and a wide range of medical specialists.  In this role, I’m a “professional.”

I marvel at how differently I am treated as a “patient” and as a “professional.”  As a patient, I can
talk coherently about my condition and the issues I face as a result of it.  I can discuss how I encounter chronic pain and debilitating fatigue, and I can ask for help in dealing with these in the most effective way for me. However, I find my voice is rarely truly listened to by the medical professionals I encounter. They may give me a cursory smile if I’m lucky – while making up their own minds about what to do next, without taking my views or experience into consideration.

As a professional, things are completely different. Teachers, therapists, parents and doctors all
listen carefully to my advice and want to learn from my professional experience. They are keen to discover more about my own life as a wheelchair user, and they highly value what I have to say. My words are heard, and they are heeded. The advice I give and the experiences I share are appreciated, and I am very lucky to be able to make a small but positive difference in the lives of children and their families living with complex conditions.

This is where my confusion lies.  As a professional, I am valued, my opinion matters and I can make a difference. As a patient, I feel devalued, my opinion is rarely listened to and certainly doesn’t seem to matter. I can’t make a difference in my own treatment and care, but I can when it comes to others –
some who have exactly the same diagnosis as me. It’s a frustrating place to be.

Here is my wish. That patients, those with chronic conditions and disabilities are valued by the
medical professionals they encounter. That together, patient and professional can work collaboratively
towards finding effective solutions so that every patient can receive the best care possible.  I believe true collaboration only works when both parties listen to each other, value each other’s opinion and experience, and work together. We are a long way from this at the moment, but we need to do better.

For now, I’ll continue down the confusing and often frustrating road of being a “professional patient” and see where it leads.

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