An open letter to ASHA advocating for the right to a communication method of choice

Recently the American Speech- Language-Hearing Association put forth the following statement:

“It is the position of ASHA that the use of RPM is not recommended.  Furthermore, information obtained through the use of RPM should not be considered as the voice of the person with a disability.”

Link to full statement: Here

Brent (an original member of Juniper Hill Farms) and I have submitted a response to this statement below:

To the ASHA Board,

This is a response to the ASHA committee’s statement regarding the use of RPM as a teaching and communication method.

I am the founder of a farm which has been home to five men with autism for eight years. For 40 years I have worked in the disability field, the last fifteen specifically in housing for adults wishing to live independently.  My family member, Brent, has been spelling on a letterboard for four years. He has little spoken language. He joined our family 30 years ago at the age of 18.

At 49 years old, Brent has a perspective on life that is different from his younger autistic non-speaking peers. He has been out of the education system for 30 years. Until four years ago, I believed that I had provided him with a fulfilling life of his ‘choice’. I now know that he is a poet, and a lover of math and science who wants a full academic education. He wants a loving relationship with a female partner. He wants what society considers a full life.

For him, spelling has not only been life-changing, but also life-saving. Two years ago, he spelled ‘STOP I AM IN NEED OF MEDICAL ATTENTION’. He described his symptoms, of which we were completely unaware. He was subsequently diagnosed with testicular cancer. Since then he has undergone surgery and regular medical exams with blood tests, Cat scans and X-Rays.

Below are his words, after being declared ‘cancer free’.

MY DESIRE IS TO ADVOCATE FOR COMMUNICATION SUPPORTS AND HOUSING FOR ADULT AUTISTICS. LIFE IS WORTH LIVING NOW THAT I HAVE COMMUNICATION. COMMUNICATION JUST SAVED MY LIFE. I FEEL GRATEFUL BECAUSE I TOLD MY DOCTORS WHAT WAS HAPPENING.

I AM THE MOST LUCKY MAN EVER. BUT THE ONES IN SILENCE ARE NOT SO LUCKY. THEY MIGHT NOT EVER BE ABLE TO TELL SOMEONE THEY ARE SICK. THEY MAY NEVER SAY I LOVE YOU.

I NEED TO MAKE SOMETHING OF MY TIME ON EARTH. THE WORST THING IS TO BE A VISITOR TO LIFE INSTEAD OF A PARTICIPANT. I WANT TO ADVOCATE FOR OTHER INDIVIDUALS WHO ARE TRAPPED IN THEIR OWN BODIES. THEY MUST FEEL THE SAME LONELINESS I DID. TIME TO JOIN THE CONVERSATION INSTEAD OF BEING THE CONVERSATION.

THE SAD REALITY IS THAT MANY HAVE GIVEN UP ON ADULTS. OUR LIVES MATTER. THIS IS MY MISSION NOW. THE ADULTS HAVE GONE SILENT TOO LONG. MY QUALITY OF LIFE HAS CHANGED DRAMATICALLY SINCE I STARTED SPELLING .

NOT WITHOUT SPELLING WOULD I HAVE BEEN ABLE TO GET THE MEDICAL HELP I NEEDED. JUST HOW MANY HAVE DIED OR SUFFERED JUST BECAUSE THEIR OWN BROKEN BODIES CONDEMN THEM TO SILENCE?

THERE IS MUCH WE NEED TO DO. LET’S REACH OUT TO SILENT ADULTS AND TEACH THEM TO SPELL ON THE LETTERBOARDS. TEACH PARENTS, CAREGIVERS AND THOSE WHO WORK WITH MENTAL EDUCATION THAT ONE IS NEVER TOO OLD TO LEARN.

We respectfully ask you to consider withdrawing your statement on RPM.

Sincerely,

Diane Belnavis

Brent Sullivan

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2 responses to “An open letter to ASHA advocating for the right to a communication method of choice

  1. Arthur Golden

    As I publicly posted on Facebook and to a “secret” Facebook group “AAC and FC” with 940 members: “The author of this open letter discloses that he had testicular cancer 2 years ago at age 47. My son Ben had testicular cancer 8 months ago at age 45. Nonverbal autism and medical care is an important issue to be discussed, which is intertwined with the issue of the use of FC or RPM.”

    Let me add here that my 46 year-old son Ben, with nonverbal autism, communicates with his type of Facilitated Communication (FC), first introduced to him in February 1991 at age 19. I have been involved in advocacy for persons with disabilities for nearly 40 years and I believe that we (and anyone else interested) should be in contact by email to discuss how to help others. My email address is golden.arthur@gmail.com

  2. Joyce Crawford

    Brent, Thank you for your wonderful story! I have read about Juniper Hill and always am so grateful for your life there..
    We have a 15yr.old autistic grandson who is doing so well in school. He will go into his sophomore yr. His school participates in a Unified program .He is in such a loving and supportive school and I can’t tell you how happy he is, as well as our whole family..Our concern for him is when he graduates. ! Where then !
    Thank you again for sharing your story and keep your spirit! I look forward to reading more about Juniper hill and all the wonderful things you all do !

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