Difficult Avenues and Open Doors

Difficult Avenues and Open Doors

(Editor’s Note:  This is the winner of our Metro Chapter’s 2014 essay contest.  Dave is an active member of our Rochester Chapter.)

Throughout my entire adult life, I have slowly been losing hearing.  For a while, it was in one ear; then it progressed to both ears.  I have had repeated bouts with middle ear disease through having tumors called cholesteotomas.  While each time I had the surgery to remove these tumors the hearing eventually stabilized, with increasing frequency of operations the resulting hearing became less and less.  The last two years have been particularly difficult, as the hearing loss contributed to communications problems and mobility challenges — none of which I could ignore.  I was approaching the point where I could be considered as being legally deaf-blind.

By November 8, 2013, I had my intake meeting to enter the Helen Keller National Center for Deaf-Blind Youths and Adults, and by December 8, I was on my way via Amtrak to New York and then to the little community of Sands Point where HKNC is located.  My first eight weeks consisted of evaluation in a number of primary areas: home management, mobility, technology, vocational preferences and possibilities, and communications learning.  As with any type of evaluation at a rehabilitation facility, I expected to need some remedial support in several of the above-mentioned areas of deaf-blind rehabilitation.  But the one situation in which I had no experience was communications learning.  So, in this specific class, I began learning the basics of finger spelling.  This was what Helen Keller started learning at the early age of her sudden onset of being deaf-blind.  By the close of the eight-week evaluation period, it was evident that I needed much support in the basic patterns of sign language.  When it was determined that I would go on into the first thirteen-week training period, my Communications Learning Center (CLC) instructor emphasized finger spelling at least once a week in our sessions.  During the regular training program, I concentrated on other aspects of communications challenges I would be facing on a daily basis — such as using the iBill to identify money; understanding and articulating the specific features of the Social Security Work Incentive Program and knowing how to utilize to best advantage the Trial Work program; and making and devising communications strategies through communications cards and the BuzzCards app for the iPhone and iPad.  Once I had built some of the simple communications prompts into the paper and electronic applications, we then went out into the community to try out these communications strategies in restaurants and stores so I could gain facility in using the new approaches I had just learned.  While there was some nervousness at first in putting these efforts to the test, they readily became easier and more real, and yet I still had to make the transition from HKNC back to my home community of Rochester, Minnesota.

The deaf-blind manner in which I approached mobility was quite different too from the pattern I was able to use when my hearing was much better and when I practiced with blindness as the primary challenge for navigating my environment.  My mobility instructor gave me experience in using the street-crossing cards both in the downtown areas of Port Washington and in New York City.  We found that on good days I could get responses from people to assist me across the street in 30 seconds to a minute-and-a-half.  In Mid-Town Manhattan, I averaged getting assistance in half a minute to 45 seconds, a fairly good pattern along new York City’s main thoroughfares.

The home management, which consisted of cooking, washing clothes, and cleaning, emphasized the idea that since I now have dual sensory losses, I need to use the touch to great advantage — along with using the residual hearing I have so that I have a combined strategy for identifying when food has completed cooking or the surfaces of a counter top or skillet are as clean as possible when attempting to clean up after making a meal.  Braille labels and touch buttons are together a tremendous approach to using the washer and dryer for a deaf-blind individual as well as for a blind person.

The one thing, which I have been introduced to before going to Helen Keller National Center, is the use of SSPs (service support providers).  These people are assistants who are paid by a grant I receive so I can go grocery shopping, take clothes to the dry cleaners, participate in community affairs, enjoy some recreation, and have good transportation throughout my local community to do all the things so important to all of us.  At HKNC, I received SSP assistance in going out into the Port Washington community and into New York City to see the Central Park Zoo.  I also attended two different SSP meetings in Newark, New Jersey and in Rochester, New York.  The new Jersey SSP program is run by vocational rehabilitation funds and the Rochester, New York SSP program is supported by several grants that furnish funds to hire the SSPs that will help the deaf-blind participants do the things that will foster their sense of independence in a variety of ways — from grocery shopping, to applying for work, to going to the movies as a recreational activity.

Although I can say that I still very much have some “bad ear” days as part of my regimen of life experiences as a newly deaf-blind individual, I can also say that these avenues of challenge are taking me to an increasing amount of open doors.  I am still waiting as I write this for the items of equipment and technology that have been recommended to me by Helen Keller National Center staff, I am able to do errands and negotiate my community, although it is at a somewhat slower pace than I would have otherwise expected before going to HKNC.

My vocational preferences and possibilities experience was rounded out by working twice a week in one of the nursing homes near the rehabilitation facility.  On Wednesdays, I played music, using the piano, singing, and playing flute for the residents gathered in the activities room.  On Fridays, I led a brief discussion that responded to some of the social and spiritual needs of the residents, exploring what made them want to get up each day and participate in the ways they now could as they were growing older.  With each musical session and discussion/social period, I would always go around the room and physically shake people’s hands and try to learn their names and just give them the important ingredient of touch that is sometimes taken for granted.  But the avenues of music and social interaction were yet two more inroads that exposed the nursing home residents to someone who happens to be deaf-blind.

What follows from my being at the Helen Keller National Center will hopefully continue to give me hope, peace, and strength as I continue to use my new skills and some of the older skills in a new way so I can make a difference in the lives of my friends and family, as well as in the lives of people throughout my home community.  And within the National Federation of the Blind, we can certainly gain from learning about the different aspects of deaf-blindness, as we may be able to be a rich, powerful vehicle of hope, peace, and strength as we forge yet new ways of providing rehabilitation to people who are deaf-blind and hearing-impaired.  We in the NFB can and must be the channels of love, confidence, commitment, and determination as we reach out to people who may have the challenging avenue of a dual-sensory loss, but yet receive the gains made through rehabilitation and integration into the society in which they deserve to be a part.