Life and Hearing Loss – Part 3

. . . taking advocacy to the next level

picture of girl with a new hairdo meeting a person in a wheelchair

What an ordinary person might care about; what a person with a disability needs.  Artist: Marius Șucan

 

A year after the committee of five at Christ Church helped put the church on the path of accessibility, a new Diocesan Commission called the Bethsaida Team was formed to advocate for people with disabilities. I sought to join the commission and was accepted. For seven years we went to churches in the diocese and did workshops, which included taking part in their worship and doing the accessibility exercises, similar to what we did at Christ Church. With input from a variety of commission members our exercises developed depth and additional challenges to the workshop participants.

From the Wiki How website's article on why white canes are used and how to learn to use one

We only set out the challenge. We never expressed what we thought they should experience. The team spread out to watch over the experiments first and foremost to ensure the the activities were done safely. We never told them what reaction they should have. We just let them go through the challenges. By and large, each participant would deal with one disability. When everyone had finished we called everyone together to have them tell us what they experienced and how they felt about it.

Generally, it was an eye opener for everyone. Few people have an idea how complex the challenges can be. It was amazing what they learned. In one situation, a man trying to experience the challenges of someone in a wheel chair, went to pick up a soup pot (filled with rolled up newspapers) from a stove and, what would be a doable task for someone standing to pick up a pot, was an off-balance trial for the wheelchair user. The pot tipped over and the rolls of newspaper spilled out over the man's lap. He sat silently for a minute, then said in a shaky voice, "I just spilled scalding soup on my legs."

(One of the points of that exercise was to show that most church kitchens are not designed to include people with disabilities. You may think that this is out of proportion, but the point is to get people to look at things from another viewpoint. (And what if there is a person with a disability who happens to be a good cook?)

Although each person worked to experience and understand that barriers for a particular disability, when they came together to talk about what they learned, the sharing of experiences deepened their experience of the barriers of one type of disability and enabled them to grasp the barrier that another person experienced.

And, once again, people with disabilities contributed their experiences to the discussion. At one workshop, two people who had what are called "silent disabilities" felt empowered to speak up, where they usually shied away from calling attention to themselves. The two people had different sources of their disabilities. One had multiple sclerosis and described how there were times on public transportation, he needed to sit down, but he didn't look like a person who would need to sit down and was reluctant to bring criticism on himself when he asked someone for their seat (as he had experienced once).

One time, at a Bethsaida Team workshop at Diocesan convention, one of the team (blind from birth) and the rector of his church spontaneously started a public conversation about how each of them had to adapt as the team member sought to participate as a leader of the congregation. It was an intimate conversation, Pastor and Lay Leader revealing their mutual struggles, full of humility and humor, and it held the crowded meeting room spellbound.  It started with the Pastor asking the Lay Leader if he had remembered the trials they went through when he had been elected to the Vestry.   I wished we had a video camera to record it. Regretfully, sometimes the best learning opportunities happen by a chance remark, gesture.  It wouldn't have been as good if we had tried to plan this.

Unfortunately, after seven years, our chairwoman died. She was our rudder and without her we had a hard time. We had worked tirelessly all those years and were spent.  We closed down the commission, hoping that our seven years of work had been lasting.

But even though the commission is no longer active, advocacy remains my ministry.

Personal circumstances led me to move to a church closer to home.  While the sanctuary of my new church reportedly had "wonderful acoustics", I found myself having a hard time.  Then I found out that there were several hearing impaired parishioners.

I will tell you this about a hearing loss. The first time you go to an audiologist for hearing aids, there is definitely sticker shock. Hearing aids are not cheap. In my case, since I had to wait 5 years to get hearing aids at all, I took the audiologist's recommendations and did not look back.

Unfortunately, it seems that people who lose their hearing when they're older - at the earliest - their 50s, let sticker shock guide them into getting hearing aids without a T-coil setting. The T-coil setting is what you need for assisted listening devices - it is a separate utility from the main function of the hearing aid. It is about the only feature that can be removed from the hearing aid to lower the price without affecting the quality of the hearing aid in everyday situations.

I am also disturbed by my impression that for people who lose their hearing later in life, their first hearing aid is their last hearing aid, so once they've made the mistake of getting aids without the T-coil setting, there is almost no chance that they will buy another hearing aid. As hearing loss progresses,  social situations become more and more frustrating and the tools available to help people adjust cannot be accessed.

When I came to St. Andrew's, my current church, I donated funds toward the purchase of a transmitter for assisted listening devices. I was stunned to find out that every other hearing impaired person in this congregation had aids without the T-coil setting. Because of that, I am the only person who can take advantage of the equipment. I cannot tell you how deeply it hurt me that my effort did not bring help to the portion of our congregation who are hearing impaired. Moreover, it also disturbs me that when I recommend certain features to filter sound so that it does not distort the experience of - everyone, actually - but especially of those who are hearing impaired, apparently people think that I do this only for my own benefit.

In order for the leaders of the congregation be able to evaluate what is needed to help the hearing impaired members of the congregation - or hearing impaired people who might like to join us, I can only recommend the exercise that we used in the Bethsaida Team exercises. I am going to suggest that at vestry meetings, each month one member wear stopples in their ears during the meeting and spend the meeting trying to hear. The vestry member should not take the stopples out because of frustration, and should not wear the stopples with the idea of not even bothering trying to hear. In order to understand the challenges to the hearing impaired, one needs to expend the effort to hear despite the stopples. It is the only way the church leaders will understand the frustration of being hearing impaired and be able to make fair and compassionate decisions, providing for the needs of the hearing impaired to participate fully in the life of the parish.

I have just retired from the Vestry, probably never to participate again, because my hearing is too poor to fully participate.  Of course, if some new  breakthrough comes in hearing aids, I may be back.  ;=p

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