An open letter to the aphasia community from Harvey Alter, written in 2007
INTERNATIONAL APHASIA MOVEMENT
This is an open letter to persons with Aphasia, their co-survivors and supporters.
I like to say that people with Aphasia are from the Country of Aphasia (after all, we do have an accent of sorts). So what is it like to be from the Country of Aphasia. Well, first of all, we didn’t choose to go there; rather, we were forced to go against our wills. And inexplicably, after we were taken to the country of Aphasia, many of us were not even told where we were.
And something else – at the present time, there aren’t many resources in the Country of Aphasia to help its citizens have a better life. And as if that wasn’t bad enough, when new people arrive in the Country of Aphasia, they aren’t even told about the few resources which do exist.
And because of this, many of the people in the Country of Aphasia feel frightened, and alone. And the people of Aphasia are going to stay that way – frightened and alone – unless they learn that they are going to have to rise up and demand what is rightfully theirs. They are going to have to demand their right to live full and satisfying lives. They are going to have to demand their right to the pursuit of happiness.
I am therefore asking you – the citizens of Aphasia – to join with me in forming the International Aphasia Movement – an organization for persons with Aphasia and their co-survivors, run primarily by persons with aphasia and their co-survivors. It will appropriately be known by the self-affirming acronym, I AM.
The purpose in creating I AM is that people with Aphasia have little or no voice in most of the existing Aphasia organizations. This means that others – however well-intentioned doctors, academics or clinicians who see us primarily as patients or persons with a disability – are speaking for us and telling us what we need or want. We are second-class citizens within our own country – we literally have no voice.
It is the time for us to join together; to make sure that the citizens of the country of Aphasia are heard and respected for what we are – equal citizens of the world community with the right to a full and fulfilling life experience.
The time has come for the many support groups and other organizations around the world that are truly dedicated to persons with Aphasia and their co-survivors to come together and speak in a united voice about the matters that concern us – not only for ourselves, but for all of the future citizens of the country of Aphasia.
I AM will focus on advocating the rights of persons with Aphasia – to a full understanding of our condition and prognosis, to medical providers who can communicate with us, to continuing therapy, to local support groups, and to the full pursuit of happiness.
I AM will also be dedicated to the needs of persons with Aphasia and their co-survivors – it will serve as a clearing house for the latest information on treatments, research and programs, it will seek to unite the support groups and organizations that exist around the world and to establish such groups in the many parts of the world where they do not exist, and it will seek to bring us together as a community to fight this fight together.
I AM is a not-for-profit organization. It is collaborating with Saint Vincent’s Hospital in New York City to develop a prototype Aphasia Support Center which can be replicated at other hospitals around the country and around the world. That Center currently provides bi-weekly support groups for Aphasics and their co-survivors, and a yearly regional Aphasia conference entitled A New Beginning. The Center also provides a monthly program of free small group and individual speech therapy. The therapy is provided by graduate students in speech language pathology who receive college credits for their participation. The Center also plans to begin Aphasia Support Groups in Spanish and Chinese in the fall of 2007.
If you would like to be a part of – or stay informed concerning – our progress and activities, please send your email or mailing address to the address listed above.
Please join us,
HARVEY N. ALTER
One of the founders of the International Aphasia Movement