down syndrome Archives - Raise Expectations

Why?
Rarely does inspiration come in a single defined moment of clarity where all your thoughts are defined into a single goal; becoming an advocate is one of those rare moments. It occurred at 0900 on September 6th 1996. Most parents would agree that your world changes when you have kids. When you have a child that needs an advocate that is exactly what happens. Its easy for me to point to when Devon was born for wanting to support the Down syndrome community, when your children are young you think about potential, you do everything you can to make sure they can achieve all that they can achieve. The reality of them growing up is much harder. This is particularly true when you have a child that has to apply for social security disability and you have to face the reality that no matter what their potential is there will be hurdles that you simply don’t yet have the tools to deal with.

My “aha” moment was the transition of Devon finishing hight school and beginning her college/transition program. Trying to figure out how much Devon was going to need to live and what kind of employment she had access to was a reality we were trying to face with as much knowledge as possible. Unfortunately, there is a tremendous amount of information regarding employment for people with intellectual disabilities. The numbers are terrible, not just based on how many people are legitimately gainfully employed, but how much they are paid. The line is clear in that most people with intellectual disabilities want to have an independent life. We also know that, for most, the road to independence runs through employment.

At the NDSS conventions, and our time with Down Syndrome International’s World Down syndrome day we have been exposed to several public service announcements (PSA) regarding inclusion and employment. Some were very factual and some very artistic, but all tugged at my part to try to be a better advocate for my daughter and family.

My desire to produce a PSA for the Down Syndrome Community began when we met Melinda Raebyen through a disability group asking for representation in music video about diversity. This was a project by Shui Productions is where people of different abilities, ethnicities, and genders would be represented in a project with a local band trying to promote inclusion and acceptance. Through the course of filming the video I was awed by the professionalism and artistry that this group of people brought to bear creating a thing of beauty and inspiration. Watching Melinda use this tool to express her vision I thought this would be the perfect vehicle for the Down Syndrome Community to send a message to the the puget sound population about what are loved ones have to offer. Inclusion and acceptance is a road to employment and independence and all of us deserve those opportunities.

Melding art and a message to create momentum towards a common goal was the intent. I wanted to help the Down Syndrome Community of the Puget Sound represent our loved ones in a way that we could all be proud. What makes each of us special is unique regardless of our chromosomes, gender, or color. The more we make this message clear the more all of us can enjoy the true potential our lives afford us.

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.