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It is with sadness but celebration, that we hear of the passing of a true pioneer and the Grand Madame of pediatric audiology, Marion Downs. As she lived her life, she passed away with dignity and grace on November 13, 2014. At 100 years of age, she leaves a legacy that touches all of us; parents for her perseverance in the implementation of newborn hearing screening and advocacy for parent choice; children who have better outcomes and opportunities as a result of early diagnosis and intervention; professionals in audiology, medicine and deaf education who have had the benefit of her teaching, influence, and mentorship; and mankind for a woman who taught us all to “Shut Up and Live” with meaning, laughter, and pride.
I was fortunate to have Marion as a teacher when I was a graduate student and as a mentor throughout my career. As a parent, she helped me gain confidence in my own advocacy abilities for my daughter and for her education.
Marion will remain a role model and guiding light as we continue our advocacy work on behalf of parents and children who are deaf and hard of hearing. Her influence changed our world and inspired many. May her legacy be not only the grace, kindness, and patience with which she treated people, but also her optimism, determination, and fearlessness in living her life.
Cheryl Johnson, Past President, Hands & Voices
If you didn’t get a chance to meet her, she was a spitfire of a lady: grounded, interested in all of life, and just sparkling with energy and drive. She packed several lives into her century: skydiving and triathlons, research and authorship included. I got such a kick out of her story about why she chose audiology: that enrollment line in college was the shortest! We are glad you picked “our” line, Marion, but I do have the feeling that any field of study would have benefited from your closer look at how things are and how they might be. At Hands & Voices, we truly appreciate her respect and encouragement of families to truly have a place at the table in designing systems for hearing screening and follow up. Her friend and co-worker Dr. Jerry Northern introduced her at her 100th birthday party last January. He remembered something she often quoted: ‘Live for today…plan for tomorrow…but let’s party tonight!’” Work hard and play hard – it’s a good motto.
Sara Kennedy, Executive Director of Colorado Hands & Voices
I was fortunate to live in Colorado and be a part of the Marion Downs National Center as the parent consultant starting in 1996. It was there that I began to get to know Marion. My favorite memories of Marion include being in committee meetings with her when a group of us would be discussing a complex issue or situation, and begin to commiserate on why something couldn’t get down and/or why the system couldn’t change. At some point in the meeting, Marion would speak up and say, “Well, let’s just get it done”. And that was it. She never looked at why something couldn’t happen, but just to keep moving forward and MAKE things happen on behalf of families and kids who are Deaf/Hard of Hearing. I always thought Marion was just one of those ‘lucky’ older individuals that didn’t have to deal with what others had to deal with in old age. She was just one of the lucky ones for whom age didn’t really matter. It wasn’t until I read her book, “Shut Up and Live” that I realized that Marion was human after all, that she was subject to the same ailments and challenges of growing older – but there was a difference! In spite of those things, she kept busy, active, moving forward, jumping out of airplanes, contributing to her lifelong commitment in her career to improve the lives of children. The world was a better place with her in it! She will be missed.
Janet Des Georges
Hear Cloe, is a blog written by the daughter of Marjorie Madsen Keilers, Director of our New Mexico chapter of Hands & Voices. In one of her recent blog posts, Cloe talks about:
I think that was the first time it really struck me that my speech and writing were impacted by my hearing loss. This situation was not the first time someone asked me if I spoke another language. One time someone asked me what kind of accent I had. The truth, I realized later, was that I had a deaf accent.
Upon further reflection, I discovered what was truly my first language. It happened during a start of school meeting with new teachers. I was asked to explain to the teachers what I heard and a the definition of a new language clicked into my head and I said “My first language is Garbled.” For a lot of teachers, that explained everything. I can hear, but I am not always hearing sounds that make up coherent words, even with the use of my hearing aids and FM microphone system. Most likely it is garbled that no one understands; sometimes even I don’t understand it.
1. “Find the strategies that work for you.” This could mean anything from sitting
in a certain spot in class or signing versus speaking. It does not matter what kind of
strategies they are or if it is the same as anyone else’s; everyone is different.
2. “Find people who support you.” Friends and family are people who fall into
this category. Teachers and classmates should also fall into this category (although in
that case, they would also be your friends, no matter how much homework teachers
gives you). However, some teachers and classmates don’t always support you. If they
don’t give you the slightest support, then do your best to avoid them. They are not the
people you want to be counting on.
3. “Invest in yourself.” This could mean getting hearing aids, or a sign language
interpreter, and whatever other tools you need.
4. “Learn how to express what you need.” This would mean asking for what you
need. You could ask for something as simple as a set of notes for a class, or speech
therapy, or (I find that this is the hardest) asking people to face you when speaking.
5. “Say [or in whatever communication mode that works for you] something:”
This is a reiteration of her fourth thought, but it is important, which is why she repeated it. You have to speak up in order to advocate for yourself. You cannot remain
And we especially like this one:
One last note to make on self-advocacy. Be patient with your AWESOME Mom, or Dad or guardian as you develop your self-advocacy skills. They have been advocating for you since you were a baby (since it is kind of hard for a baby to say anything in it defense except look cute). Sometimes it’s hard for them to accept you are growing up! And be sure to thank everyone who supported you!
You can read Cloe’s blog here: Hear Cloe