Raise Expectations

advocacy, fellowship, information

Raise Expectations

The Equalizer

by

The Great Equalizer

The “American Dream” is an ideal that those born in the United States and those who come here as immigrants are supposed to have. That means different things to different people; it isn’t the dream itself that is important, but having the dream. People who don’t have dreams or purpose tend to do poorly, or feel lost. Teenagers who have a dream or goal have a reason to go to school, push themselves and persevere.

One of the things as parents we have to do is foster those dreams. I know this sounds like an obvious thing to say, but it is often one of the hardest things about being a parent. Your kids are different then you and you may not be able to understand or even agree with what they want. The thing is, you still have to foster their hopes and dreams because having purpose is crucial to success. Success may mean different things to different people, but you will never be able to define another person’s success, or at least what it means to them.

What makes a successful society? The altruistic model of looking at a successful society would say that the mark of a great society is how they take care of their disadvantaged. The practical model would say that having every member of said society contribute in some way minimizes charity and adds to the stability. Globally, for a society to be successful everyone in that society has a role to play and in our society that means employment. Much has been written about employment rates as predictors of economic growth and the strength of a countries economy. In our time, employment isn’t just about a job, but having a purpose. Unfortunately, it has also been clear that the type of employment and pay vary greatly based on gender, race and zip code.

At this point, I suspect, most of you reading this are asking your selves why I titled this blog “The Great Equalizer”. To begin, we have to ask ourselves, what is the largest minority in this country, and the world for that matter. I will give you a hint, it is a portion of society that does not discriminate based on color, gender, or zip code. Since much of what I write about is disability advocacy you can correctly assume it is our disabled brothers and sisters that make up this minority.

While we talk about nationwide unemployment rates hovering around 5%, it is not an accurate reflection of all of society. In 2014 a study found that the number of people with disabilities in the U.S. who were actually employed was 12.9%. That isn’t unemployment, that is employment of people ages 18-64 who are classified as having a disability. What is also pertinent is that this rate isn’t affected by gender. In most studies, including US census data your employment opportunities are not affected by your gender if you have a disability.

This means based on the study, only 2.1 million out of 16.3 million (or about 1 in 8), civilian, non-institutionalized men and women with a work limitation, aged 18-64 in the United States were employed. This is really important because it’s not only hard on the individuals, but the Social Security and disability trust fund almost went bust in 2016, and was saved only by funds being diverted. Unfortunately, it is on track to go bust again by 2023. With more then 14 million people with a disability who aren’t employed collecting benefits, its hard not to believe this is important.

Even though most people with a disability receive some sort of governmental aid they still make far less money then their peers, and are more than twice as likely to live in poverty. We raise our children with hopes and dreams of what their lives will be like. After all, we live in the United States, home of the dream that regardless of the class you were born into, you have opportunity. No one wants to tell their child that they will likely not have a job and will live in poverty.

No matter what the family’s resources are, without social security, kids do not have access to job coaching or healthcare, as well as many other benefits. No matter what, this is currently one of the only paths in our country to independence for people with disabilities. To maintain their benefits, people receiving benefits from social security can only have $2000 to their name at any given time, forcing many of the people who may be able to work more to accept less work so that they don’t lose their benefits.

A purpose, we all deserve a purpose. Being employed gives people a purpose and has been shown to improve the physical and mental health of those gainfully employed. Thus not only is someone who has a purpose less dependent on the government, they are likely to be healthier and thus less likely to drain their healthcare benefits. “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”

*based on statistics provided by VonSchrader, S., Lee, C. G. (2017). Disability Statistics from the Current Population Survey (CPS). Ithaca, NY: Cornell University Yang Tan Institute (YTI). Retrieved from Cornell University Disability Statistics website: www.disabilitystatistics.org

The Point

by

The Point
As most of you know I have been writing stories about inclusion, diversity, and acceptance for many years now. My latest project, Eximius, will be heading into its third year. Given that I have another “day job” I am often forced to ask myself what it is that I am trying to accomplish, what is the Point?

Being a dad and an orthopedic surgeon is all that I can manage some days. The job of an surgeon can be incredibly stressful. Working as an author doesn’t sound like it can be as stressful in comparison. However, It can be very demoralizing trying to make an impact in the publishing industry. No matter how hard you work or the quality of what you do sometimes it just doesn’t catch on. Your hopes and dreams of people all over the world feeling what you feel just doesn’t happen.

Sometimes, after being up all night dealing with people not a their best who have been in accidents, I find myself emotionally drained. When I am in this state I look at my efforts on the advocacy and publishing side and say to myself, I am doing all I can, what is the point? Everyone faces these same questions, some of us face this question every day. Just because I am a surgeon, a dad, an author doesn’t mean these feelings are unique to my own stresses it just means that the answer has to be unique to me. These questions are something that everyone at some point in their life will have to answer. People will have to answer that question if they are to keep going, and that answer will be different to everyone.

A study just came out saying that we are psychologically completely different people in our 40’s then we are as kids. Most of us understand that growing up changes us. However, its not just the clock, its kids, relationships, jobs, experience that changes us. That smooth round pebble in the creek bed didn’t start out smooth and round. It took many years of force changing its shape for it to become what it is now no matter what it looked like when it started. So as humans the forces that effect us throughout our lives change and shapes us. if we aren’t changed by our experiences then nothing has happened to us.

There is an acronym used to describe difficult things that happen to kids called ACES (adverse childhood experiences ) that we know can have great impacts on those kids for the rest of their lives. So we have to except that what has happened to us effects who we are and the we cannot take that away, we can’t change history. In that moment when all these forces to come to bear on us we often ask ourselves what is the point?

I am at that point in my life when I want to have an impact on the world greater then my immediate family. I want the world to be a better place for me having been in it. I know this all sounds cliche, but it is the truth. On those days when my message that I send out gets no response no matter how important I think it is, its hard not to get a little depressed that other people don’t get it.

Why try? What is the point? Isn’t it enough to be a good father, surgeon, husband?

We are trying very hard to get Eximius going and I have begun to feel sorry for myself that maybe it isn’t worth it.

The answer to that question of what the point is came to me on my birthday. My oldest daughter watched the video to my latest kickstarter and texted me, completely unsolicited.

“You are doing so much more than i think you realize, it’s not just for the community of disabled people, you’re truly saving and changing lives Dad – and that’s something that’s so precious I can’t even put it into words. That feeling and that action are to precious for words. I’m so proud to be your daughter and to be a part of this family :)”

I realized at that exact moment (after I wiped my eyes off) even if not another person ever saw what I was trying to do that the fact my daughter saw it for what it was meant that she was going to pass it on. Those greater forces that have effected and shaped me into the stone I was today were my family. If my daughter could see the value in what I was doing, that meant a generation of people was heading in a positive direction. The aim for all of us, is to make the world a better place for our children. If our kids keep going down that path than maybe things will be OK. I don’t have to change the world with one tweet or post. I don’t have to sell millions of books.

I have to get out of bed everyday and strive to be a better person and keep trying. Because… the people that matter the most to me are watching. It is those people , Brenna, Devon, and Ian that are our future and give me hope. Set the example, because the example is the message, even if you think no one is listening or watching. Someone is, and they matter.

Disabled?!Superhero?!
Yes!

by

By Christine @ChrisDisability
Superheroes are fighters, change-makers, leaders, and advocates. If that sounds terrifying or nothing like you, fear not. At one time in my life, I would have agreed with you. So, what’s the secret to going from shy and hesitant of a disabled identity, to a person who can’t shut up about disability issues?
There are a few things that led to this evolution.

It took me much longer than I’d like to admit to truly feel comfortable in my disabled skin. I have cerebral palsy, so there’s very little hiding it. You get teased and bullied — especially name-calling, have challenges finding people who can relate (and even more finding people who see you as equals, friends, or romantic interests), likely have battles with self-advocacy and accommodations, and regardless of your abilities, can be beat down to feel like nothing is good enough and you’ll never fit in here. If any of that sounds familiar, it was my childhood and adolescence as well. It is the story of many disabled people. Those of us born with our disabilities have been fighters since day 1. There is no other way you will have gotten here without fighting. That makes you super. I’ve also acquired quite a few medical conditions over the past twenty-eight years, so I’ve seen both sides – visible and invisible. You have to fight in very different ways when you become disabled. There’s the “convince someone this condition is disabling” fight, “adjust to the change in life,” fight, and the daily fights of managing a chronic condition. All of these fights as life adjusts make you super as well. Sometimes, just getting out of bed, or not needing an ‘as needed’ medication, can be a super feat.

Leaving high school, and the awkward teen years, was when I began to shed the uncomfortable feelings I had about disability. Branching out after high school and meeting new people forced me to get more comfortable with my disabled self, but the thing that made the biggest impact was meeting more people with disabilities and finding that community. I started volunteering with a local organization, assisting with clients while they expressed themselves through the arts. Not only was this a lot of fun, but also I was able to find a way to feel connected to my identity. Being around other disabled people, I was no longer the weird kid, but myself. I read a memoir by a woman with CP, and suddenly I wasn’t alone. I began to feel like I wanted to work on empowering other people with disabilities who felt like I had. That led me from special education assistant jobs to working with disabled youth. While working with the youth, I was able to learn more about how vast disability really is, and mentor them to achieve their goals. It was a wonderful experience to watch my youth grow and become more comfortable with their identities quicker than it took me. I continue to mentor a young woman to this day, and will for a very long time.

In addition to embracing disability, one of the most important realizations I came to is that I can lead or make changes without having to be loud and bossy. I think there’s a perception that leaders and change-makers have to act a certain way, and if they don’t, you can’t be a leader. Sometimes the quietest people have the most to say, and that was certainly me. One person is enough to be super and make an impact. It might not change the entire world, but you can change someone’s world. Changing one person’s world is enough to make the most shy, awkward person truly feel super. Once I realized that I could make an impact, I felt unstoppable. I use to engage in superhero change through AmeriCorps, but now, I use my leadership powers for advocacy and educating people about disability issues.
I’ve come to realize that my disabled identity is a superpower all its own. The way I view the world is through a lens of empathy and understanding. I don’t believe I would be as empathic and understanding if I didn’t have to live a life where I’m sometimes misunderstood. Life with disabilities isn’t always easy, but it is pretty great to realize that it comes with super powers.

Epiphany the Power of Women

by

I grew up the oldest of two brothers. The only thing I knew about women was from books and television. Even I knew not to believe my friends. My mom was a powerful example of quiet strength who kept the family together physically and psychologically. Her opinion was so important that she didn’t need to punish me because the mere thought that she was disappointed in me would bring me to tears.

I stumbled through high school and College where I met my now wife of 26 years Susan, beautiful strong, equal parts. Sue inserted herself into my my mind and heart in a way no one can ever predict or prepare for. I was trying to get into medical school and the last thing on my mind was a relationship and here I was. Sometimes the best, most poignant moments of your life are absolutely unexpected and you just have to ride the wave realizing you don’t have control of everything. So, the next chapter of my life was unexpected and amazing.

Flash forward to my residency at the University of Michigan. Sue and I have now been married a few years, she was working, I was working and we have a little girl on the way. A few years later, she is working and I am working and we have another girl on the way. There is nothing that changes you more then love, that is except the love of a child. When you have a child something about your DNA literally changes. With my relationship with my wife, Susan, I became a better man, a better person. The sum of us was better then either individually. Sue has become part of who I was completely and totally. When you have a child you aren’t the sum of anything you are something wholly different. When you look at the world it looks different. When you have a child future means what is it going to be like for my kids, not what is it going to be like for me anymore.

When you have girls you look at the world for what opportunities it has for a woman. You want your girls to be successful and happy. Growing up in a family with only me and my brother we didn’t think about what opportunities women had. We knew my mom voted and worked, but we didn’t know she didn’t have the same opportunities as my dad. I had two girls and one with an intellectual disability. My girls deserved the same opportunities everyone else had, and now that fight was real for me. I am ashamed to say that it wasn’t before. Its not that I didn’t think my mom and wife should have everything they worked for, but you have kids, as I said, you look at the world differently, it changes you.

I have fought for the rights of women and people with intellectual disabilities for more then 22 years now. I believe part of the mark of being a man is an appreciation of how important women are. Any man who can’t say that isn’t a man or has lived in a box.

The 2016 elections have been hard on all of us no matter which side of the isle you are on. As a dad with daughters and a wife that I would do anything for, much of the rhetoric has been past my ability to comprehend. When the election was over it was very hard, just has it has been for many people. Watching the inauguration we all kept waiting for that message of togetherness, lets get past this, and when it never came we all felt hollow inside.

Until, until today January 21st 2016. I watched millions of women all over the world make their voice heard, in clear, poignant ways. Today I have hope, I have hope that diversity, inclusion, and Love will not be lost. That the president of the United States works for us, and most of us are women. I ,for one, can’t imagine a better person running the world then my mom, my wife or one of my daughters.

In 1920 a woman’s right to vote was established in our country. My epiphany is that on the 100th anniversary of a woman’s right to vote women who are the majority and the backbone of our great country and world will be able to determine the course. I truly believe that this is a wake up call to the world that hate, bullying, and lying will only get you so far. Without a foundation you cannot build a structure worth anything. Woman are the foundation of our society and without them our nation and our world will never achieve greatness.

Superhero What does it mean to you

by

For most of us we grow up fantasizing about some superhero we read about in a graphic novel, or watched in a movie. Sometimes it was a book, or even a favorite toy that became real as soon as we had it in our hands. All superheroes have some power or something special that sets them apart. They can fly, or run, or have super strength. Superhero powers don’t have to be this cliche or obvious, but at the end of the day we fantasize about what it would be like to be a super hero. We run around the yard with our own private super hero held over our head dreaming what it would be like to fly. Sometimes we fall asleep at night thinking about how easy it would be to sneak down and watch tv if we had super speed or invisibility.

The thing about superhero’s is that we like being able to see ourselves in them. We may not look or act like them, but we can see ourselves enough that we can dream about being that superhero. Part of our psyche is believing that there can be someone fighting for good who is special out there who does things that we would do if we had powers. Everyone growing up needs a hero or superhero. Even though all heroes don’t have some superpowers there should always be someone that we can imagine making the world a better place. It is equally important that the person or being who is our hero is someone that we can visualize our self being. We can see ourselves as that hero.

What if? What if there aren’t any superheroes that look or act like you? What if, when you close your eyes you can’t see yourself in any of the stories or movies you have seen or read about. If you are a white able bodied male you probably won’t have that issue. It doesn’t mean you are bad person if you are a caucasian male. There are just a lot of caucasian able bodied heroes to choose from.

Every kid needs to be able to see them selves as that hero. In fact, everyone of us doesirregardless of age. No matter the color of your skin, your sex, your nationality there should be someone who is super that you can help change the world with when you become that superhero.

I never thought about this as much until I had a daughter that didn’t have a superhero with Down syndrome. We couldn’t find a doll that looked like her when she was a kid, she was different in everyone else’s eyes. In her eyes and in her heart she was just like everyone else and deserved to have that Idol, that hero. The superhero with Down syndrome , or in the wheel chair, or with autism?

There were certainly superhero’s with disabilities in the media, but these heroes were not really representative of the population they were mimicking. Just like having an able bodied actor play the part of the person with cerebral palsy or the character with the intellectual disability being played by the neruotypical actor, its not the same.

I want to tell a story, create a narrative. An imaginary world where people with different abilities, skin color, nationality, or sex are super. They need to be super in a way that is meaningful and real. I want people that truly emulate the population they represent so that a child can pick it up and close his or her eyes and see themselves doing amazing things.

One thing I have learned is that I don’t know what I don’t know. That sounds easy, but its not. You have to start with the premise you don’t know everything even if you feel like you should. I know my daughter but I am not her, I have to ask. I have to let her represent herself. I have to ask for help if what I am going to do it to be TRUE. I don’t know what I don’t know so I will ask I will ask for help, I will ask for input on character development and behavior. I will research character portrayal and vet my ideas with people who are part of the narrative. If this sounds like a contract its because in my mind that is exactly what it is. This is not just a blog this is my reminder to myself why I do this and how I have to be true to the people no matter what. Eximius is latin for Super. This project exists because its important that we all have someone when we close our eyes is like us and is making the world a better place, because one day, maybe that person won’t have to close there eyes for that dream to come true,..

#superherolikeme

Ableism, a dad’s perspective

by

This is a word I have come to learn over the last few years. It can be said that you can never truly understand what someone else is going through, though I think it important to try. None of us is perfect, but it is the attempt each and every day to be better that keeps us moving forward. Many, if not most, people in the disabled community understand this word, but I felt it important to write about it as a dad who is not technically disabled but who does his best to understand because he has a daughter with an intellectual disability.

Merriam/Webster defines ableism as : discrimination or prejudice against individuals with Disabilities

Part of the reason people who aren’t in the disabled community don’t quite understand ableism is that some of what we do is based on societal norms that have built up over time. We have seen the same thinking with racism and sexism. The belief that the color of your skin make you somehow a higher or lower form of human is something that we know is ridiculous, but historically there were people who believed this to be true and perpetuated a terrible belief system that we unfortunately still grapple with. Sexism, discrimination based on someone’s gender. The fact that is still a word we need to use given all the data is an embarrassment, but none the less it too still exists.

I think for people without disabilities we need to examine how society has chosen to look at disabilities. There are three distinct models people use to discuss how society views disability; the moral model, the medical model, and the social model.

The most out of date of date of these models, if you will, is the moral model. In this model society/families look at disability as a punishment from God or a deity and families have to “repent” for whatever wrong caused this.

The medical model is looking at disability as a diagnosis or problem to be fixed. Not as a person who may simply be different then you. Looking at disabled people as broken things to be fixed perpetuates the “sympathy porn” that has been pervasive in the media.

The social model states that disability is part of life, part of the human experience. This is the model we are trying to move forward as we all seek to better understand the human condition and move towards a more inclusive/accepting society.

Part of the reason I am giving you these models to think about is so that able bodied readers can understand, that the reason many people don’t understand ableism, is that they think what they are doing is good. How can doing the right thing based on my frame of reference be wrong? The key word is “my frame of reference”.

Its all about perspective, you can not make suppositions about someone else’s thoughts or feelings if you have no basic understanding of what their life is like. You have no right to make suppositions about anybody for that matter, but even making generalizations about the disability community is inherently wrong. As a man you can’t pretend to understand what it is like to be a woman. You can support her, listen to her try to understand, but…. As a white person you will never be able to “understand” what it is to grow up a person of color. As someone who walks without thinking you will never understand what it is to be in a wheelchair. As someone without an intellectual disability you will never understand the challenges of someone with an intellectual disability.

To understand what Ableism is we must accept that WE DON’T KNOW. If we accept this then we ask, we include. How do you play the role of the person with cerebral palsy? “I don’t know, maybe we should hire an actor with cerebral palsy?”

Discrimination is discrimination. That is, we should NEVER discriminate against someone because they are different. If we accept that we don’t know then we have to ask, we have to communicate. You can’t accurately depict or represent someone if that said person is not part of the decision process.

Ableism is often harder to pin down because we don’t see it as a problem. The most recent is what has been termed “inspiration porn”. I am inspired by your very existence. Publishing stories that make abled bodied people feel good because someone else did something nice for a disabled person so we all get to share in the sentiment. It may make some people feel good but lowers our expectations for that person and in the end is harmful and can be degrading.

I want to include links by a couple people to help me since I have to admit, I don’t know.

http://www.huffingtonpost.com/entry/dominick-evans-ableismexists-twitter-discriminationagainst-disabled-people_us_571902c9e4b0c9244a7b2eb9

http://www.bbc.com/news/blogs-ouch-27840472

As a dad I try to understand and one thing I will leave you with is what my daughter tells people when she talks about advocacy.

Remember: “Nothing for us without us.”

Sean Adelman Biography Continued

by

One thing that haunts me is that of all my memories growing up, playing football and going to school, I can’t remember a single person with an intellectual disability that I knew of personally. I know now that they were there, but how could I not know or see them?

During my residency in Ann Arbor at the University of Michigan we had two girls our first in 94 and our second in 96. My oldest daughter was a brilliant, beautiful girl just like our second. The only difference being our second daughter had Down Syndrome. There is nothing as humbling as being a parent. It is even more humbling to be a surgeon and a new parent to a child with something you feel like you should know about, but in your heart you know unequivocally that you know nothing.

My wife, Susan, is the most amazing mom in the whole world and knew that we needed to raise Devon like everyone else. Even though, at the time, people I knew and respected in the medical community were telling us all of the things she wouldn’t be able to do. Still, we persisted and she surprised us at every singe turn. Every time we thought she wouldn’t be able to do something, we let her try and far more often then not, she proved capable.

My residency was completed in 98 and we traveled to Florida for my Air Force career to begin as well as learning to be a new orthopedic surgeon and dad. Once again, Susan was not just the glue but the cement that held us strong, even when I was sent to Afghanistan right after 911. The gift of my deployment over seas was a new son. And so, with my Air Force career winding down we were looking for a place to move on to the next part of our lives.

The next part of our lives would be back in Ann Arbor where I took a job with friends I trained with and was lucky enough to find neighbors who became great friends. The reason I bring this up is one of our new friends was a writer and lover of literature. She was also wise and loving and influenced my vision of wha I could do. You see, I had become frustrated with how people viewed my Daughter and wanted people to see what she was capable of. I wanted her successes to be an inspiration to others. So, with the influence of my friend I decided to write a book. I wanted to write a fictional story where the characters were able to do things my daughter was able to, but the stories were fun. I wanted this to be more then a recipe I wanted families, friends, and siblings to read my stories and know what was possible.

I set about on a journey, one book turned to two , which became three and then four. Much to my delight my books were well received, but hard for my target audience to read. I wanted a way to find a voice or a tool that would allow people of varying abilities to have someone to identify with, a hero of sorts.

Thinking about what I could do next I thought of all of the wonderful imaginary influences I had growing up in comics and stories. I wanted to create a real set of superheroes who we could all aspire to be. People who’s power came not in just what they were given, but in what they were not given, that rising up was something we cannot measure. Making a graphic novel that represented the disability community in a very real way would be unique and important. I had no desire to create something that wasn’t real, something that was created based on my own impression of what it was like to be in a wheelchair, or talk differently, or even think a certain way. Our project had to be something visual, to pull people in and make it accessible for people with varying intellectual abilities. It had to have meaning for everyone, but especially to those I want to find themselves in the story. It wouldn’t just be a story, but a living thing that moves and grows with the people who it represents, so that they have a say how there hero’s are portrayed. So with that, I contacted an amazing artist who helped me with my book covers and pitched this crazy idea.

Why don’t we write a graphic novel. Not just a graphic novel but living, breathing thing that we will bring to life with the heart of an amazing population of people who are the largest minority in the world and who deserve better, who deserve heroes. who deserve a voice. Why don’t we call it Eximius latin for Super, extraordinary. Please enjoy, not just the story and the amazing art, but the community and the movement.

When Education Fails

by

I am writing this because a hole was opened in my world with my daughter yesterday.

As most of you who follow me know, I post a lot about how wonderful my daughter who is now 20 and has Down syndrome does in her daily life. Much of what I love to talk about is how capable she is. We have had our ups and downs with the education system.

I have always felt that despite our difficulties we managed to make the best of it and now that our daughter is taking some college classes and becoming independent that we were doing our job.

Yesterday, she was taking her end of the year test, which was an open book test. It still wasn’t easy, but she has the skill set to do searches and figure most of it out. She occasionally ask her mom and myself questions and we make sure to assist her but not give her the answers.

The test was a multiple choice test, written as most are with several answers that sound the same, a few that are clearly false and two that you need to either know or guess. The point or the epiphany, if you will, was that my daughter understood the material but didn’t understand how to take the test. It’s not that she can’t learn, its just that it became all to clear that no one has taught her actually how to take a multiple choice test. Taking things for granted… if you have been taking multiple choice questions since 2nd grade, these things are somewhat ingrained in the “typical population” you could add the smiley face grades she received in “included” classes where she lost skills because the teacher did not expect her to be able to write…

I realize this sounds strange, or even petty. Why would someone care if your special child can take the test? “We are teaching her have her in the class , isn’t that enough?”

Exactly, once again someone (actually many people) assumed that her sitting in the class was enough. Despite our care of her education over the years there was a gaping hole that had been propagated.

As I sit here I have to reevaluate what I thought I knew and how to go forward. Its not just about taking a test, its about believing that my daughter CAN take a test.

I don’t have any answers other then to say as parents you have to be diligent.

You cannot assume that because your child is going to school that they are being taught.

You cannot assume that because your child is going to school that they are learning.

You cannot assume that because your child had grades on their report card that they were ever tested.

You cannot assume that your child is being included based solely on their presence in a class room.

As a parent you will never win every fight, there are fights you may choose to not win or even fight at all. There will always be battles that you are unaware of. Know this, no matter how well intentioned those around you might be, no one knows your child like you.

You may not always know the answer, but you will never have an answer if the question is never asked.

Sean Adelman is an orthopedic surgeon who lives in Seattle Washington with his wife, three children and two dogs. Sean has served in the Air Force and is currently in practice in Seattle. He loves running obstacle races with his children, playing guitar, and writing. Sean’s middle child has Down Syndrome which is what began his journey of becoming an author and an advocate for disability rights, inclusion and acceptance. “My greatest joys in life have been times spent with my family.”

The R Word Bursting the Bubble

by

I am guilty, guilty of believing that because I’ve worked hard, have a good job and live in a nice neighborhood, I can protect my family. Maybe, I should say, take care of my family instead. When you have a child your genetic make up immediately changes, you want the best for those little ones, you want to protect them, make sure they grow up happy. As your children grow you quickly realize you can’t protect them from everything. You also learn that you probably shouldn’t either, if you protect your kids from everything then they will never learn. Never- the -less, it is now in your genes to try.

I grew up the son of an army officer moving from place to place, often to places where as a caucasian male I was the minority. I always felt that because of my childhood I had a more clear perspective of diversity. I know from my many friends of color that I can never really understand what it is to grow up a person of color or another ethnicity. I wanted to believe that at the very least I cold be a better person and raise my children to be better people. Growing up with a rainbow of diversity made everything monotone seem wrong.

Those lessons of diversity soon became something that sat in the background as I tried to focus on college then medical school making a life for myself. That life would come to include a beautiful woman who agreed to join me in our life Journey. Marching through a surgical residency gives you very little time for anything but survival, but being the humans we are we somehow found time to make our first child. I never pictured myself as the picket fence kind of guy, but here I was with a paycheck, a house, a wife, and a child.

It wasn’t till my second child, a beautiful girl, arrived that my diversity training as a child became more important. My second daughter was born with Down syndrome. At first it was a shock, the surgical resident in me thought “I know all the bad medical things”, but the dad in me didn’t care. So, our journey began, having a child who was different. What’s weird is that it was never really different, we raised her like our other child and never treated her any different. I know that sounds cliche, but life just become life and sometimes you assume your normal is everyone else’s.

We were privileged beyond our understanding, having our daughters begin their lives in a diverse town with great schools and early intervention. She was very young so there were never any arguments about whether she was included or not. Great things don’t always last and even great things change with time so that they aren’t great anymore. So as your child grows their needs grow and school budgets are cut, and things just change.

So here we go, middle school, its time to move and she is almost in high school. The town we are moving to is a progressive, hight tech city, so we have hope to continue to build a positive life for our family. I have a good job and equity in our house so we set upon the mission to find the perfect neighborhood. This is not a special mission because we have a special needs child but certainly adds to the importance since we can’t rely on being in a private school. At the time we moved most private schools didn’t allow kids with special needs that was relegated to the public schools. After a long search we made an offer on the home we now live in. The neighborhood is old and full of old professors and young professionals. We are officially in a bubble.

After six years we have had our fights with the school system, I have written three books celebrating Down syndrome and diversity and my wife has dedicated her life to inclusion and making the world a better place. We are making a difference in the world now. People with intellectual disabilities are different not “bad”. Our country is making progress with accepting diversity of race, diversity of sex, diversity of ability, diversity of everything. We are not deluded enough to think we are there, but we do think there is progress. Sometimes when you live in a bubble you don’t even really know it. Its easy to walk out the front door and assume that everyone else has the same view you do.

Social media has become part of our lives and connects us to a world of people who have the same goals we do. One of the movements we are following is the “Spread the Word to End the Word” campaign. The use of the “R” word is a demeaning word long used to describe people with an intellectual disability. Our family saw the value in the campaign and supported it financially and by sharing the message. Outside I saw the value in this movement, but inside I couldn’t imagine anyone saying that to our daughter.

Devon was smart, going to college. She was completely independent riding her bike to the light rail then commuting ninety minutes via public transit so school and work each day, both ways. Devon was a hard working amazing young woman who inspired me every day. My bubble was complete, until.

Our world was all bubble gum and rainbows until riding home from a full day of classes. She exited the light rail station and was riding her bike through our privileged neighborhood when a young man just walking on the sidewalk in the opposite direction yelled “Hey Retard” at her. She was just riding her bike home. She gets home and ask me to help get her bike in the garage, not because she isn’t capable, but because we had left things so it was hard for any single person to store something in the garage.

“How was your day? Devon”.

“It was good, how was your day Dad?”

“I am just happy I am home to hang out with you.”

She goes down the stairs to see my wife and I notice that she is crying on her shoulder.

“What’s wrong Dev?”

My wife, “Someone yelled the R word at her on the way home.”

After several minutes of discussion we had the details, Devon has an amazing memory, and that it had happened in our neighborhood, from the family or friend of someone we may even know.

At this moment in time we want to minimize the impact on Dev, knowing that her own worth is not dependent on others and what they say. Inside I am burning up trying to understand what would inspire someone to be so hurtful. I know there doesn’t have to be a reason, I know people are people. This singe act reinforces the importance of inclusion. When you grow up with someone would you still act so callously? Maybe, maybe not. I choose to believe that someone who grows up in a diverse world looks at it differently.

Now I look at all of those people who I have listened to using the R word recently and shaming myself for not having said something. I rationalized that they didn’t mean anything, but now I feel like I have failed my daughter in some small way. When you have kids the laws of physics don’t apply. If your child needs a little less gravity in the world, then by golly, you are going to make it happen.

Racism and prejudice aren’t colors, sizes or sexes. They are a tunnel that is made of concrete and no windows. Racism and prejudice don’t care what neighborhood you live in or what car you drive. Racism and prejudice may never go away but if we hope for it to ever get better we need to change the route so people can see the beautiful landscape.

As angry as I am at this young person for needlessly hurting my daughter I know the truth is that I needed something to burst my bubble so that I can move forward with renewed energy at the hope that we can still change the route.

Sean Adelman is an orthopedic surgeon who lives in Seattle Washington with his wife, three children and two dogs. Sean has served in the Air Force and is currently in practice in Seattle. He loves running obstacle races with his children, playing guitar, and writing. Sean’s middle child has Down Syndrome which is what began his journey of becoming an author and an advocate for disability rights, inclusion and acceptance. “My greatest joys in life have been times spent with my family.”