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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The System Is Broken for Foster Kids With Disabilities

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I found myself in tears yet again today. I thought I knew what to expect. I thought I knew how to live in a place of empathy and love and compassion. But, I was completely caught off guard today. I have been the parent of a child with autism, and a different child who has muscular dystrophy. I was a special education teacher for many years. I am now the principal of a school for individuals with autism. I have worked with tons of bureaucratic systems. I have always gotten my boys what they need. I thought I knew what was required of my heart.

And then I became a foster parent. Nothing can prepare you for how broken this system is. Nothing. Today, as I put a beautiful blue-eyed child down for a nap, he looked at me and said in his tiny voice “Where is my family?” In that moment, I was shattered. I didn’t know. I didn’t know what all his needs were or why he had moved to us after four other moves in less than a year and a half. My list of things I know about this little boy is much smaller than the list of unknowns.

I see a little boy who needs love, stability, and consistency. A little boy who will call any female caretaker “Mama” and who wonders where his brother and sister are. A little boy who needs boundaries and the chance to show the world his amazing personality. I see a little boy in need and at risk of falling hopelessly behind.

The bureaucracy sees a little boy at great risk. A little boy who needs developmental preschool along with all the accompanying services: speech, occupational, and physical therapies. A little boy who probably needs behavioral health services, a developmental pediatrician consult, a host of experts I am familiar with (developmental disability services, for example) and some I have only learned about when I entered this world (guardian ad litem, for example). The system sees a little boy who should live with family if possible. Evidently, in his case, it isn’t possible, but how those decisions were made is not information I am considered entitled to receive.

After being in care since the fall of 2015, this little boy didn’t come to me with a list of previous placements, doctor visits, or enrollment in school. I wouldn’t know anything about his previous placements if I did not comb through his preschool special education evaluation and IEP. I wouldn’t know anything about his siblings if his previous foster mother hadn’t included a note and mention of a brother. I know he was born 12 weeks early, but I don’t know if he has any medical needs. He came with an inhaler, presumably for asthma, but other than reading the prescribing information I don’t know anything about it. I don’t know if there are other medications he needs. He came with one pair of glasses and three boxes of broken glasses. If it wasn’t for the special education evaluation, I wouldn’t know he is extremely far-sighted. This is a little boy with obvious developmental delays, but he did not come to us with clear answers.

The bureaucracy does not work the way it is supposed to. After being in care for as long as he has been, he should have come to us with a lot more information. A society should be judged based on how it cares for the most vulnerable. Most of the time, in this world of a broken system trying to help struggling families, I think we are doing a terrible job.

If I had a magic wand, I would create a different system — one focused on prevention to stop as many children as possible from entering foster care. For those who still needed the care, I would make a system to look at each child as an individual. I would identify those children most at risk of developmental delays (possibly because of trauma) and provide extensive early intervention customized to that child immediately. I would aim for stability of placement and treat foster parents as partners working for the good of the child. I would revise the training for foster parents to focus on the realities and not the gumdrops and roses viewpoint a lot of our training focused on. I would provide foster parents with as much information as possible so they can advocate and intervene effectively for the child.

But that world doesn’t exist. I focus my efforts on the children who come into my home and on areas of influence I have related to prevention. I think a lot about our society and the care it provides to the most at risk.

I have to carry on. I have to provide an engaging home, care for his needs – known and unknown — and provide him with love and consistency. I have to look at that little boy and see not all the things he cannot do, but see the possibility. I have to figure out where his developmental delays are and move heaven and earth to get him whatever services he needs. I have to tape my shattered heart together and tell myself I can do this. I have to look at those blue eyes and tell my heart it is OK to fall in love. The cost of not doing so is far too great.

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Thinkstock image by Tatyana Tomsickova.

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Why Disability Education Is Needed in Medical Schools

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As a biomedical sciences student and aspiring doctor, I am often taught about disease, its clinical manifestations and how it is treated. I am rarely taught about the positive elements of disability. This worries me a little. A lot of people who become doctors nowadays are not exposed to the environment of disability, nor do they fully understand disability as a whole. Consequently, they lack a positive view on disability.

I am not ignoring the challenges that come with disability, but I am saying that disability can be a motivating element in one’s life – it can motivate you to do much more. It can equip you with the strength and resilience to face the daily problems life can bring with great bravery and maturity in your heart.

I believe teaching the true meaning of disability in medical schools and health science courses is essential to making more empathetic and compassionate doctors. This is often overlooked in medical schools, and doctors might not know how to understand a person with a disability because of their recurring exposure to the medical model of disability. Understandably, some doctors take a more medical-centered view of the disease state, and while this is also essential, we need to educate doctors to see the potential and abilities in their patients, and not see disability as a bad thing. Educated doctors should be able to bring a more positive attitude towards disability into the workforce.

The social model of disability tells us that we are more disabled by the attitudes of society than our actual impairment. This is so often forgotten in medicine and by medical students and doctors. This is why medical schools should be encouraged to teach disability education in their courses on a regular basis. Medical students should be able to see that people with disabilities have potential and abilities and just like them, they can contribute to make a big difference in their community.

Most patients with disability do not want sympathy. They want empathy. They want you to understand them and really know their needs. They want to be treated equally and not looked down upon. They want you to see the potential they have and celebrate the major achievements in their lives. They want their doctor to believe in them and offer words of encouragement.

To solve this problem, when medical schools are interviewing aspiring doctors, I encourage them to talk about disability, and ask about the applicant’s views and attitudes on disability. When lecturing about illnesses in university, think about ways you can minimize or prevent disability bias. Creating a diverse environment of doctors and medical students with disabilities is important too, because then we can all learn to understand each other better and hopefully contribute to a more positive outlook on disability. So please, wherever you are, let’s get the discussions going on how we can integrate disability education into medical education.

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Thinkstock photo by Michael Jung.

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