Self-Advocacy Inspiration

We have some incredible self-advocates in our community and we would like to introduce you to Jen Strauss! Jen recently became a lifetime ambassador for Nothing Down, who’s mission aligns with GiGi’s Playhouse in changing the way the world views Down sydrome.

She graciously agreed to write a guest blog for us about her life and ambassador experiences. Thank you Jen!

Guest Blog by Jen Strauss

 

By December 2018 when Nothing Down announced on their Facebook page that they were looking for 2019 Ambassadors, I jumped on it. I put the application in. It took until February 10 to find out that I was an ambassador and the only one in Wisconsin. Things were looking up for me as I knew what I wanted to do since I am a self advocate.

Within a few weeks, I was in the Marquette Tribune putting my slow rise to stardom in the spotlight. I took my role seriously to where I was even putting a pie in my face. In March, I went to Gallery 21 hosted by MADSS and I was told that there is a Disability Prom in May and I jumped on that, too. During that month I said to myself that I need a sash that says Nothing Down Ambassador.

I was also interviewed by my sister’s friend who works for Spectrum News and that aired on 3/21. A dear friend of mine saw my Facebook post on that and she was able to help. Joan Ballweg messaged Nothing Down and told them that she would love to meet me. We finally did meet in April 2019 and it was awesome. After a few months as an ambassador, I saw how quickly things were changing for me. By May, it was time for the Disability Prom and I proudly wore my sash with my beautiful blue dress.

Also with my role as an ambassador, I was at two events where I spoke about my life growing up and how I was treated. By August, Father Marquette Days came and I was on my church’s float. I wore my sash for that. I also found out through a video that Nothing Down invited me and plus one to go out to New Jersey for their Reach For the Stars Gala in October. I was sponsored. I chose my nephew for my sister was not able to go.

By September, I was at the MADSS Buddy Walk in which I helped out and early October I went out to Neenah for their Buddy Walk because I was not going to miss out on meeting David DeSanctis. Then my nephew and I embarked on our trip to NJ. Again, I wore my sash and my blue dress.

I always get excited for October cause I do my yearly video messages and I also start a fundraiser. By November and December, I kept active by sharing everything that Nothing Down shared on their Facebook page and did their challenges as well. I did very little.

By 2020, I started my birthday fundraiser and the donations went to Nothing Down and it went above my goal. I still wanted to continue by speaking at events but COVID showed its ugly face by March. March 21, 2020, I became a Lifetime Ambassador for Nothing Down and I was so happy but I could not celebrate. By May 29, everything came to a screeching halt when I broke my left ankle and needed emergency surgery that night. My doctor had to put hardware in. I was told that I had to wear a cast. So the day before I went to the rehab/care center, I chose blue and yellow and called it Down Syndrome With A Twist.  I spent 11 days in the hospital and then 40 days at the Montello Care Center to rehab my ankle. It tortured me emotionally because of COVID and not able to have visitors.

When I got home by July 19th, I decided to make the most of my ambassadorhood by trying to stay healthy and to try to do some Down syndrome related stuff. By August, I submitted a picture of me in my blue dress with sash to NDSS to possibly be on the Jumbotron in Times Square in September. Well, by September 20th, I was on the Jumbotron for 8 seconds and it was the best 8 seconds of my life. I even had another fundraiser for NDSS and I even reached my goal of $1,000. By October, I did my video message and stayed active by doing daily Down syndrome facts for Down Syndrome Awareness Month. I enjoy doing that, too. In December, a friend reached out to me and asked if I could be a part of her book on Down Syndrome individuals living on their own. I submitted and now I can’t wait for her book to come out.

Now it’s 2021 and I’m praying for a better year. I have given some thought on the COVID vaccine and I do want it, even though I’m nervous about it. I’d like to be the first person with Down syndrome to get it. My birthday is coming up on January 14, so I think after that, things will look up for more opportunities to do in the Down Syndrome community here in Wisconsin and in general.

 

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1 Comment

  1. Lisa Nicole Schaffel on January 7, 2021 at 6:49 pm

    I am so proud of Jen Strauss to become an Ambassador for Nothing Down, she is so brilliant and really smart young lady. She can inspire others as well for other people with disabilities and Down syndrome to become an Self Advocate.

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