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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Lisa D'Andrea.

When I Feared I Wouldn't Be 'Chosen' as a Woman With a Disability

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I was born with weak muscles. I went to many doctors throughout my childhood to find out what the problem was. It took me a little longer to reach developmental milestones than most other kids who didn’t have weak muscles. Eventually I walked, but I limped, fell easily, and had a hard time getting up. I had my first surgery at the age of 11; it was for scoliosis. I was told it would make me walk better. My spine was fused to a metal rod and straightened as much as possible. After 10 months in a body cast, I didn’t come out walking any better. I knew then I had to sort out my expectations for my life.

Around the age of 12, I knew I wouldn’t be getting any better. I wondered what joys could I expect from life as I had to live it. I remember counting my sister as a blessing that would be mine forever. I looked into the future and I crossed marriage and family off the list, as I couldn’t imagine anyone choosing me in the condition I was in. I figured I could develop a satisfying life with my friends and devote myself to my career instead of family. I resolved to have a happy life without the prospect of marriage.

Much to my surprise, I had a very exciting first kiss in junior high. I even dated in high school and college and had several long term relationships. Still, deep down inside, I harbored a dark truth that I would never be chosen as a wife. After graduate school was finished, it surprised me that I started longing to be married. Of course, I picked somebody who who had extreme fear of marriage. My boyfriend didn’t just have cold feet about marriage, he walked around on polar ice caps! His parents had a very bitter divorce, and he concluded nothing good could ever come from marriage. We stayed together over many years and many distances. We even bought a house together, but still marriage was not on the horizon and I figured I should let go of that dream.

On his own, my boyfriend saw a therapist concerning his views on marriage, and the thaw began. One morning, we woke up and he started talking about how well we knew each other, how much love we had between us and all the things we had been through together. He then brought up how it pained him that in my childhood, I believed I would not be chosen for marriage. “So Lisa, I’m not asking if you’ll marry me. I’m making a statement — I choose you to be my wife.”

Being chosen was one of the happiest days of my life, and it was so worth the wait.

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The Problem With Those Prom Stories About People With Disabilities

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It’s that time of year again. The sun begins to feel warm again. The snow melts. The birds start singing.  The days get longer. The air smells like rain and thunderstorms. And millions of teens make grand gestures, plan after-parties, buy dresses and rent tuxes and limos, all in preparation for prom.

The ringing in of prom season means we will soon be regaled with the retelling of a few stories in which upstanding young men and women ask a person with some type of noticeable disability to the dance of a lifetime. The stories will spread like wildfire through Facebook, Instagram and Twitter, with compassionate, well-meaning people making happy comments, clicking the thumbs up or the heart, and praising the young adult’s parents for raising a thoughtful human being.

On the surface, it is all warm and fuzzy, and I do commend the young people and their parents for understanding that people are simply people regardless of their ability. And yet, the nationalizing of these stories irks me to no end. My husband has had the pleasure of hearing more than one angry rant of mine in direct response to these heart-warming stories.

Why? Because I believe it’s subtly dehumanizing. It shouldn’t be national news that a person with a disability gets asked to prom. And it’s incredibly hypocritical. On the one hand, the masses are affirming and praising the fact that a neurotypical individual can see past the neurodiversities of another and “treat them just like anyone else.” On the other hand, the mere fact that they are praising this and calling such national attention to the act presupposes that it takes some type of gallant, noble personality to actually see the individual with a disability as a regular person. Doesn’t this presume that differently-wired people are not regular people?

By spotlighting the young man or woman and praising them for being so thoughtful, doesn’t it send the message that people with disabilities are so different and less-than that it’s amazing they get asked at all? Or that they get recognized on a basketball team? Or that they have friends stick up for them in front of bullies? Why is this national news? Shouldn’t it simply be expected?

Seriously, if society really stood behind the belief that people with disabilities should be treated like anyone else, wouldn’t the headline read, “Boy asks girl to prom?”

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To My Future Girlfriend, When She Sees My Wheelchair

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Dating for me has never been difficult. I don’t go around looking for friends to be friends with a guy who uses a wheelchair; I look for hockey fans, beer drinkers, dedicated business owners, and other driven individuals.

The same goes when I’m looking for a mate. I don’t look for someone who “would be OK dating someone who uses a wheelchair.” I just assume if you’re friends with me, you know this is how I get around, and it doesn’t socially define who I am.

That’s who I see.

That’s who my ex from high school says she saw when I asked her before I started writing this, and that’s how I’m sure all of my friends see me.

They see someone who happens to be fighting for legal rights in Canada to make all stores and shops wheelchair accessible. They see a guy who will give up his hockey tickets and miss the game if you need someone to talk to. They see a dedicated friend.

So why shouldn’t you see me as someone who is “wheelchair bound” or “disabled?” Well, that’s just it. I’m not. I’m not what society has labeled me. I want to break down these labels, these negative stereotypes that have held people back for 20 years.

I consider myself “differently able.” I get around town on public transit, go for beers at my favorite watering hole, find ways to create access where there is none, and do what I can to make a difference in the life of a child. Society is so quick to stick labels on people, labeling them useless and saying they won’t be contributing to society… this is not true. You won’t find a guy more dedicated to making a change that will make a positive difference for so many people.

The next time a guy using a wheelchair starts hanging with you, don’t assume he won’t want anything more than friendship. Sure this might be the case, but just think about that person as a human being and treat them accordingly. Critique them the same as you would any other potential partner.
Are they cute? Funny? Driven? Do they have all the qualities you look for in someone? If you can answer yes to all of that, don’t be afraid to make the first move.

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