Self-help

The Glowing Blue Light

By Miguel Aguayosupport_groups

For the first eight years after becoming profoundly deaf, I tried living in the hearing milieu denying my hearing loss
and passing as if it did not exist. This made conversations with me inconvenient for hearing co-workers and friends to maintain a conversation with me outside the workplace. As a result, countless of weekends were spent as a spectator social activities instead of being a participant.

Giving up on that scene, I decided to socialize with other deaf people. But my integration in the deaf community was also a challenge because people of Deaf Culture did not roll out the welcome wagon for those who happened to become deaf.

The only real commonalities I had, as a deafened person, with Deaf Culture was the absence of sound and being victims of patronizing attitudes and the experience of discrimination when engaging with hearing folk.

It took many years of stubbornly attending deaf community events and refining my sign language skills before being granted a small measure of tolerance. But even then I really didn’t fit in. I was a naturalized citizen in the deaf community who was accepted and respected but not embraced by its members.

My decision to become a deaf community member was good for me despite the differences. Socializing with people of Deaf Culture changed me. I was no longer ashamed to admit being deaf and stopped longing for the days when sound was part of life. At that point, I ditched the hearing aid that had long since stopped offering benefits.

But a life absent of relatedness can be a lonely one. Although people, both hearing and deaf, said that they understood the impact of hearing loss. They really didn’t. Neither can someone with out hearing loss or one who is raised with deafness can develop an empathy for what a deafened people experiences.

Genuine empathy from other deafened people is what drew me to the Association of Late-Deafened Adults (ALDA). I joined the association in its early days when it was just a small group of deafened folk using self-help as a way to make life without sound more coherent.

Like myself, ALDAns were thrust into a twilight zone between the hearing and deaf worlds. They too were in a place were only deafened people really understood. A feeling of belonging amongst deafened people was as mesmerizing as a fly finds warmth in the soft glow that emits from a bug light.

The draw of empathy and understanding was so strong that promoting self-help became one of ALDA’s primary objectives. Chapters were encouraged to provide it for members who struggled to cope. ALDA provided self-help training though a dedicated track at ALDAcon, its annual conference, to ensure that the chapters had a steady flow of leaders who could provide structured support to recently deafened folk.

Regretfully, self-help has vanished from ALDA’s mandate. Training is no longer offered at ALDAcon and, as far as I can tell, the chapters do not organize self-help sessions for those coping with acquired, profound deafness.

It’s hard to say why self-help fell off ALDA’s radar.  There could a number of causal factors. I  don’t think anyone knows for sure but cochlear implantation may make deafness less isolating at its onset. It might also be due to Facebook and other text-based social networking outlets helps deafened folk to maintain their pre-hearing loss relationships. Perhaps ALDA is simply populated with long time members who no longer need self-help.

Whatever the cause, the blue light bulb has burned out for newly deafened folk and this brings sadness to my heart.