Raise Expectations

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Raise Expectations

Inspiration Perspective

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Inspiration Porn

I have danced around this saying since I started this work several years ago. I have decided to post something about this since I have been questioned on social media and cautioned to make sure what we are doing with the #SuperheroLikeMe project is not inspiration porn. I have to start by saying that as a caucasian male there are certain things in life that I will never experience. I can empathize and try to understand, but I will never know what it is to be a person of color applying for their first job. There are things that my daughter Devon experiences every day as a woman and a person with Down Syndrome that I will never experience. So that is my disclaimer, I write this as a white dude so that other people who are outside the looking glass might be able to see a little clearer. My sincere hope is that I can put this in perspective to those who don’t really understand. So this is not a post really intended for people living it, more for those who don’t understand why people living it might be upset by someone congratulating a person in a wheelchair for being awesome getting into their car.

The person we talk about most when thinking about inspiration porn is Stella Young. She was an amazing young woman born with osteogenesis imperfecta, who was in a wheelchair and really coined the phrase ‘inspiration porn’. Unfortunately she left us in 2014, but she left us much to think about, specifically, her Ted Talks: https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much

I have tried so desperately to understand inspiration porn, that I sometimes feel I go the other way. I know when Devon was young and I saw those stories about the kid with the disability running in the touchdown on the last play of the game when there team is up 5 touchdowns and the other team stops playing so he can run it in. I shared and cried till I realized the purpose was for everyone else to feel good. Not that the kiddo didn’t have fun, but that wasn’t the point. If someone congratulated me for being able to get into my car without help, I would wonder, “Is this some kind of sick joke?”

Celebrating someone for their mere presence is insinuating that there worth is dependent on you. Allowing someone to achieve, or fail, irrespective of what you think, is treating them as an equal. I always think about definitions when I try to explain this. Tolerance is permitting someone to be in your presence with no acknowledgment of their existence. Acceptance is acknowledging someone’s existence, but not expecting anything of them. Inclusion is expecting that person you have accepted to want to do things and treating them as such.

Respect is not the same as pretending to be inspired by someone’s existence. I have tremendous respect for my daughter’s ability to work incredibly hard for things some people find easy. I am inspired by her passion, her ability to try harder than anyone I know to achieve her goals. She is an adult woman, with opinions and challenges that I will never understand, but will always respect. Don’t applaud people for existing, respect people for living their lives. Expect people to have hopes and desires just as you do. Allow people to succeed or fail regardless of what you think they are capable of.

I want to now include a quote from Stella’s talk;

“I really want to live in a world where disability is not the exception, but the norm. I want to live in a world where a 15-year-old girl sitting in her bedroom watching “Buffy the Vampire Slayer” isn’t referred to as achieving anything because she’s doing it sitting down. I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people, and I want to live in a world where a kid in year 11 in a Melbourne high school is not one bit surprised that his new teacher is a wheelchair user.”

To see the world as we should, sometimes we have to accept our own biases. If we don’t accept that we cannot possibly understand everything everyone is going through, we will never listen to them. If we don’t listen, we don’t learn, and for someone to not learn something every day of their life is tragic. Inclusion allows us more opportunities to learn understand and grow. Inspiration porn is discrimination that is sugar coated in a way that makes us feel good. They are hollow calories that should not be consumed.

Embrace your own flaws and learn from those around you. You can’t learn if you don’t listen. If there is one take away from this blog post it is Stella’s last words from her Ted Talk.

“Disability doesn’t make you exceptional, but questioning what you think you know about it does.”

Investment Happiness

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Investment Happiness

April is often the month of fundraisers, banquets and silent auctions. Over the years we have gradually increased the number of organizations we support and thus find our weekends full. This weekend was a particularly long weekend. My wife and Devon spent the entire week in Washington D.C. lobbying for disability rights and inclusion, leaving me to work as a single father most of the week. Fortunately, our youngest is pretty independent, but still. After a week of less sleep and surviving, my lovely wife is back in town only to find out we have a weekend full of obligations. For those of you who may not know me, one of my least favorite things to do is dress up to go out to a fancy dinner.

The funny thing about these banquets is that I always lament going till I am there. Saturday was just such a day. You know how it goes, bad weather on your day off, day goes by quickly and before you know it you have to get dressed when all you want to do is finish your book while it rains outside. To make matters worse imagine getting stuck in traffic on the way, then getting hopelessly lost in the underground parking lot.

One of the hardest things in life is to stay in a bad mood when you are surrounded by people that are happy. I don’t mean happy in the sense that they just got out of a movie they enjoyed, but genuinely happy in a way that if you turned out the lights and couldn’t see a thing you would still know how happy everyone was. In my world I am Devon’s dad, my role is to float along and introduce myself while everyone marvels at how amazing she looks in her dress. No one loves dressing up more than Devon and tonight she was wearing her frilly Bell dress that was impossible to ignore. After a few minutes following Devon around, it was easy to forget I was in a bad mood.

Sometimes the road to happiness is a bumpy road with lots of turns, so after being elevated in my mood I was brought crashing back to earth by subject of our banquet. The ARC of king county is an amazing organization, but talking about the woes of Washington State’s education problems, affordable housing, and employment, my depression was deepening. The ARC is working tirelessly to make a difference and one of the stories was about a woman with an intellectual disability that lost her home and was homeless for two years. She came to the ARC and after much work they were able to get her back in a place to live and off the street. So the roller coaster of emotions continues and I find myself surveying the room. The topics are serious, but people are so happy, it’s not that they don’t understand the importance, and in some cases dire nature of the subjects, they are just able to enjoy the moment, the party, the people.

As I have posted before, it is sometimes hard not to get despondent about our progress with regard to disability rights and civil rights in general. My daughter is human, and a very emotional one at that. She gets upset about things, but is always able to enjoy the moment. Most of the people at our banquet were happy and enjoying the night. That night, your bank account didn’t matter; your job didn’t matter, just being here for a good cause mattered. I looked at everyone having a good time and realized that this was a reciprocal relationship. The volunteers and donors were here to give to something they believed in. People who are part of the ARC are happy because of the party and that they are being celebrated.

Before I finish my point I want to be clear giving money and support to something you believe in is not inspiration porn. Liking a post on Facebook or Twitter is not the same.

I have always said that my kids bringing me happiness and I know that Devon in particular is able to find the good in things that I struggle with, but after dinner I was convinced just as inclusion in the classroom was good for everyone’s education. Inclusion in life and supporting others is in our DNA. Being the crazy surgeon I am, I researched it, and interestingly enough there was a published article in science (Spending Money on Others Promotes Happiness
Elizabeth W. Dunn, et al. Science 319, 1687 (2008); DOI: 10.1126/science.1150952) showing that spending on others does make you happy.

Its been shown time and time again that once our needs are met, more money doesn’t necessarily make you happier. People who get an unexpected windfall of money who spend it on others are happier. There was no advantage to spending it on yourself if you measure happiness as your endpoint.

Having spent most of my early life spending every waking moment trying to be a surgeon, I am at a point in life where I can appreciate that the road to happiness is not only something I don’t always understand for myself, but is different for everyone. One thing I do know from every fiber of my being is that no matter where you are in life supporting someone or something you believe in is good for the soul. No matter how much I don’t want to put on my suit and go to a fancy dinner, I always felt better about my life afterwards. Even on days when my day job gets me down I know that my day job helps me have moments like I did this weekend. Support is a two way street, the people you support give back in ways that you can’t always see, but always feel.

Eleanor’s Leadership

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It is sometimes hard to predict what inspires us. After a week of depressing news about how our world is slipping from the path of inclusion and acceptance I find myself asking: what can I do to make this world a better place for my children? People are looking at the world right now in a very narcissistic way. My future, my job, my house I don’t have, what I want now. The culture now reminds me of one of the things the purportedly differentiated the Japanese auto makers from the US automakers in the 80’s and 90’s. Looking at quarterly profits vs a ten-year plan. Setting the foundation for a long-term investment vs what can I do now to maximize what benefits me. I can’t pretend to know if that was, in fact, true, but it represent an ideological paradigm of delayed gratification for a long-term future vs a narcissistic approach to instant gratification.

This is important because countries and people across the world are seemingly thinking more in a nationalistic way as opposed to global wellbeing. Case in point is the roll back of EPA regulations. Why invest in something now that will take years to make a difference when we need jobs now? You can just as easily ask the question, why leave my money in the bank when I want a new car now? Protecting the environment is an investment in our kids future, not our own, it’s not tangible and is only meaningful if we are not so narcissistic to think that it matters.

I use these as examples so that we can examine human rights in the same vein. Repression, and discrimination robs us of our future and those of our descendants. We ignore the possibility of a better future by scaling back on the progress we have made towards a more diverse, accepting society. The United States was one of the original nations to push this agenda of Human Rights on the United Nations. In a time when the world was more divided than ever, after World War II, Eleanor Roosevelt was a voice the world listened to. I don’t want to pretend that the US was all wonderful. Everyone who has watched “the Help” or knows that the average life expectancy of someone with Down Syndrome in the 1970’s was in the 30’s knows that our very recent history was terrible by many accounts on the subject of Human Rights.

This is where leadership comes in. Great leaders don’t just complain about what is wrong with the world, they don’t just push buttons and blame others. Great leader raise us up, they make people believe that we are capable of more. In a perfect world this means everyone. I don’t mean this as an ideological statement on political beliefs; this is a statement of inspiration. Parents model good behavior. Your children will do as you do, if you tell them to be good but continue to set an example contrary to your words, they will emulate what you do. Leadership is a form of parenting, and great leaders understand that.

Eleanor Roosevelt understood this. Even during her husband’s term she worked tirelessly to help the disenfranchised and bring inclusion and acceptance to a White House that was under siege from some of the more difficult times in our history. After his death she continued her work and in 1946 was appointed as a delegate to the United Nations. She was appointed head of the Human Rights Commission and thus was instrumental to the formulation of of the Universal Declaration of Human Rights. She submitted it to the UN assemble with these words:

“We stand today at the threshold of a great event both in the life of the United Nations and in the life of mankind. This declaration may well become the international Magna Carta for all men everywhere.”

If you want to review the 30 Articles from the Universal Declaration of Human Rights its summarized here: http://bit.ly/1lXHrpz

For Eleanor Roosevelt it was not just her moment at the UN, but her style. One thing that I think many of our current politicians could learn from her was her willingness to do what was right even in the face of pressure from forces in our society that may say otherwise. I think this is characterized in her quote:

“Do what you feel in your heart to be right—for you’ll be criticized anyway. You’ll be damned if you do, and damned if you don’t.”

For more info you can check out http://www.humanrights.com/voices-for-human-rights/eleanor-roosevelt.html

One person may not be able to change everything, but one person can set the example. At times like these we need leaders to help us begin the journey, not to use hate and diversion to force us on a path of fear. A leader can be anyone with the heart and courage to make a difference. Titles and political appointments don’t make you a leader. I wrote this today being inspired by Eleanor Roosevelt’s words. We have cell phones, computers, and apple watches, but we don’t have inclusion and acceptance, at least not everywhere.
No clichés today, just hope. No matter what’s going on we have to have hope. Hope is our time traveling superpower. With hope we can accomplish anything, without it, nothing.