This article originally appeared in Vol. 1 No. 4 (Aug., 1993) of the Facilitated Communication Digest, [pp.1-2].

SPEAKING FREELY

Bob Williams

Bob Williams is a disability activist currently working as a lobbyist for the United Cerebral Palsy Association in Washington. He was personally responsible for advocating for many of the major provisions of the Americans with Disabilities Act. He presented the keynote at the Syracuse Facilitated Communication conference in May, which is reproduced here. Williams presented his speech using a letter-board and a Liberator, a communication device which provides a voice output (he types independently with both these devices). His speech followed an introduction by Doug Biklen, who thanked Bob for his constant reminder over the years that communication is a free speech issue.

I want to do several things today, the first of which is to tell you of a woman I met last year. Kathy is her name and she has cerebral palsy. I met Kathy in September when I keynoted a conference on assistive technology and systems change in Nashville. Following the conference, my partner Helen and I visited a developmental center in Nashville. It was there on the last unit we toured that we met Kathy. She used a Bliss board to express herself. Upon first meeting us, Kathy pointed to symbols with the words "I wanting to go" underneath them. Not wanting to jump to conclusions, Helen asked an aide to read what Kathy was saying. The aide consulted Kathy, who again pointed to symbols with the words "I wanting to go" underneath them. The aide said that Kathy often expressed the desire to move out of the center. It was likewise reported that Kathy once lived in a group home, but was returned to the institution for some undisclosed reason.

Upon first meeting her, I used my manual communication board with Kathy, and she took a keen interest in it. Later as were leaving, I spoke to her using my Liberator. It was then we learned of her interest in obtaining a similar device. When I told her that the law said she should get what she needs she cried inconsolably and with good reason.

Kathy is very much like many others I know. The greatest rigor she faces is not her disability, it is others' severe ignorance and profound underestimation of her abilities. Until she is afforded a better means of communication, Kathy, as well as the others we saw, will be silenced and stymied by the State of Tennessee. Kathy, like all others, has the fundamental civil and human right to have her views heard. This right must not be one that is abrogated, diminished, or suppressed by the state on the basis of anyone's real or perceived disability. Sadly, however, Kathy's rights and those of others we all know already are being violated precisely because they are perceived to lack both the ability and thus the right to speak their minds. Historically, the ability of speech has been closely associated with the capacity for language and intelligence as well. Individuals with speech disabilities therefore typically have been assumed to have limited intelligence, and to lack both the ability and right to express ourselves. The good news is that due to a volley of letters we sent, and the widespread attention we received from the media throughout Tennessee, Kathy is now living in the community. The home she now lives in is one she shares with twenty other individuals with disabilities. It is far from perfect, but it is a beginning.

Kathy's life seems to be looking toward a change, but her story, and the lesson we must learn from it, must not end here. Kathy is just one of thousands of American's with disabilities who remain very much "out of sight, out of mind" in our nation today. Increasing access to assistive technology and personal assistance will not solve the problems of institutionalization, isolation and segregation. But both assistive technology and personal assistance can and must each become a major impetus in bringing about change and liberation in the lives of people in institutions and nursing homes throughout the country. For tens of thousands are still robbed of their freedom of speech and other fundamental rights on a daily basis.

For Kathy and others this gets translated into being denied access to needed communication devices and being denied access to literacy learning; it contributes to the fate of those who live and play in highly restricted and segregated settings. It gets translated into these things in Tennessee and elsewhere.

Doubt is not a bad thing. It is why we are here today. It is why Helen and I met Kathy. Doubt isn't a bad thing. It is why and how we grow as a nation. The seed of doubt grew for almost two centuries to eradicate slavery. That same seed is growing today and will help eradicate the slavery of silence.

I know Howard Shane. I know others who genuinely doubt the validity of facilitated communication. They have that right; they have that obligation. We have the right; we have the obligation to prove them wrong. And in validating facilitated communication, I make this simple plea to all people from all sides and to the media, and that is: in validating facilitated communication, we must not lose sight of, first and foremost, validating the person who relies on facilitated communication.

To those of you who rely on facilitated communication, I make one more plea, and this I know isn't a simple one, but if we are to break the silence, you must lead the way, especially with people who still have these doubts. It isn't necessarily right, but it is the way things are, and if we are to lead others out of silence, you must lead the way.

Thank you.


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