Today we have a guest post from Katie, the author of For Elysium blog. Thank you Katie for joining us on The Road!
Music has an undeniable influence on memory, as significant moments in our lives are connected to the music we listened to at the time. My earliest memories tied to music are understandably guided by my parents’ tastes.
At age 12 when my own music interests started to develop, they were prompted by another member of my family–my great uncle. One day visiting his house, I related to him country music’s level of “uncool.” He insisted that I put on his enormous headphones and listen to Mary Chapin Carpenter on his “jambox.” At first I was intrigued. Then he played “Quittin Time” and I was hooked. It is still one of my favorite songs.
I recently began thinking about a song by Depeche Mode that was on a compilation CD in my car at the time I was pregnant with Natty. Just another track, probably one I skipped over a hundred times to get to my favourite.
After her birth the very same song suddenly became full of meaning, so hugely significant it could have been written just for us. It seemed to be speaking to the family of a child who was born vulnerable and spending her early, precious, irreplaceable weeks in a Neo-Natal unit. I actually listened for the first time.
It summed up the guilt we felt at our shock after her arrival, the sorrow that cut through us as we watched her being subjected to uncomfortable procedures, the pain of the empty crib at home where she should have been sleeping, the fear that she would grow up remembering the aloneness in the incubator, that overriding feeling all parents have that they would do anything at all to make things better.
In its essence the United Nations (UN) is a family, a family of nations. And at the heart of its millennial missions is the family. As a result, for 2015 an emphasis on the family motivated the UN to invite families from its member nations to take part in the issues affecting them and the world. Humanity is diverse, and the UN recognizes that diversity is not just about skin color. Different abilities paint the landscape of humanity as much as color and gender. How we, as a society, treat our most underserved is reflective of who we are.
That should be the Ruby’s Rainbow mantra. In fact, in thank you’s, Facebook post and everything in between I have many times used the quote from Helen Keller “Alone we can do so little; together we can do so much.” I believe this with every fiber of my being…and have seen it first hand in our organization. Let me back up a little…
by Michael Bryant of Global Down Syndrome Foundation with a few notes by Mardra Sikora
“Learn from yesterday, live for today, hope for tomorrow.” – Albert Einstein
As recently as 1983, a person with Down syndrome was barely expected to live into adulthood. Three decades later, most of the people living with Down syndrome are adults, and have the potential to live long lives, with many expected to live to 55, 60, and beyond.
These facts are a source of pride for the Down syndrome community, reflecting how far we’ve come in so short a time. The reasons behind the dramatic increase are many, and they each show a major step forward:
Phoenix is the host city for his year’s NDSC Convention in June, and it’s where we’ll be bringing together people (that’s you!) and professionals in the Down syndrome world, and let the learning begin. Really, there is nowhere else on earth that you can get this kind of opportunity for education and sharing under one roof.
And since the P in Phoenix also sounds like F, let’s go ahead and make the leap that P is for Families!
The Arc is the largest organization in the country advocating for and serving people with intellectual and developmental disabilities (I/DD), including Down syndrome. We have a rich 60 year history of advocacy and grassroots organizing that continues today through our nearly 700 state and local chapters nationwide. Our mission has always been to promote and protect the human rights of people with I/DD and actively support their full inclusion and participation in the community throughout their lifetimes.
At the national headquarters in Washington, DC, we currently maintain 9 national programsthat are actively changing lives in our community. We also hostannual eventsthat bring together families, self-advocates, and professionals to share ideas, inspiration and resources, and we work to support our chapters to advocate at the federal and state level and provide services to their communities at the local level.
Have you heard of Mosaic Down syndrome but wondered what it was or how different it is from Trisomy 21?Has some one asked you if you can have “a little bit” of Down syndrome?
We learned about mosaicism at the 321eConference and we asked our friends at IMDSA to share some of that information with our community.President Brandy Snow tells us what mDs is and how IMDSA helps “Unite unique people in a unique world.”
This week there is the Buddy Walk on Washington. Big things are being done on the big stage. But, what’s happening at home in your town? The local groups have their feet on the ground, working for the families of their community, helping, teaching, and reaching out. As an example, let me tell you about the Ds group in my city, the Down Syndrome Alliance of the Midlands. As of two years ago I knew nothing, really, about what they do. So I called and…
Justice is something of a hot topic lately. News reports of another person with a disability being mistreated or lost in the system seem to appear daily. One organization that focuses solely on finding justice for our loved ones is the National Center on Criminal Justice & Disability (NCCJD).
Americans with disabilities are victims of violent crimes at nearly three times the rate of their peers. ~David Perry – The Atlantic
Why do police keep seeing a person’s disability as a provocation? Cops keep wrongfully killing the intellectually or psychiatrically impaired. ~ Harold Braswell – Washington Post
We asked the The Arc NCCJD to tell us a bit about what they do, and how it relates to a cause near and dear to us here on The Road – #JusticeForEthan. Our thanks goes to Eliana Peckand the rest of the staff at NCCJD for what they do and for taking the time to write this post!