Wednesday, 23 October 2019
We sit at a corner table in an empty upstairs section of the restaurant while live Georgian music plays downstairs. Yevgenievna, in her late 20s, cannot hear it—or any music. She has been deaf since birth. But with the help of a hearing aid that’s linked to a wireless microphone, which she places on the table, she can hear some sounds, and she is adept at reading lips. She speaks to me primarily in Russian, through a translator, but she is also conversant in English.
Yevgenievna and her husband, who is partially deaf, want to have children who will not inherit hearing problems. There is nothing illicit about our discussion: Russia has no clear regulations prohibiting Rebrikov’s plan to correct the deafness mutation in an in vitro fertilization (IVF) embryo. But Yevgenievna is uneasy about publicity. “We were told if we become the first couple to do this experiment we’ll become famous, and HBO already tried to reach me,” Yevgenievna says. “I don’t want to be well known like an actor and have people bother me.” She is also deeply ambivalent about the procedure itself, a pioneering and potentially risky use of the CRISPR genome editor.
The couple met on vk.com, a Russian Facebook of sorts, in a chat room for people who are hearing impaired. Her husband could hear until he was 15 years old, and still gets by with hearing aids. They have a daughter—Yevgenievna asks me not to reveal her age—who failed a hearing test at birth. Doctors initially believed it was likely a temporary problem produced by having a cesarean section, but 1 month later, her parents took her to a specialized hearing clinic. “We were told our daughter had zero hearing,” Yevgenievna says. “I was shocked, and we cried.”
Their daughter could have received a cochlear implant, an electronic device that uses surgically implanted electrodes to directly stimulate the auditory nerve. People with such implants can understand speech, but typically can’t hear music. But Yevgenievna and her husband weren’t interested in the device for their child because friends in the Russian deaf community had bad experiences with it—likely because they didn’t receive the proper rehabilitation after the surgery to deal with flood of new signals to the brain.
Later, they learned the cause of their daughter’s hearing loss was genetic. Testing showed she had the same mutation in both of her copies of a gene called GJB2. The mutation, known as 35delG, is one of the most common genetic causes of hearing loss. People homozygous for 35delG, like Yevgenievna’s daughter, will inevitably have hearing loss, albeit to varying degrees. At the time, neither parent had ever had their genes tested—or even thought they had inherited their hearing problems.
It's not as if we have to spend most of our time being called cultural and signing to fend off all the time, but the total lack of support in the UK for deafened people is creating huge anger and despair at being ignored entirely.
With local authorities, and the DWP refusing point-blank access to support unless we sign or are blind as well. Social media complains that the NADP a charity set up FOR deafened people is not just pointless, but failing in its purpose. BSL users get interpreters HoH and deafened get nothing, WHY weren't they making the case for our support?
"To National Association of Deafened People: Reading the news today, there was an item covering 'Direct Payment' in Wales. 6,000 disabled claimants were complaining local authorities were not paying them enough to cover their support need (Which was rejected by LA's). We also noted the 'Deaf' area was also refused control over hiring and firing BSL terps too by refusing them the means to hire who they want, (primarily their own BSL interpreters opposed it, they didn't want 'clients' as their 'employers'.)
Direct Payments seemed to me as a deafened person an ideal avenue to claim that allowance so I could employ the text or lip-reading support I needed as a deafened person, and in the process, set precedent for others and create demand where Wales had less than FIVE text support listed staff for 300,000 with hearing loss, two of those were BSL terps, with questionable lip speaking skills using BSL most of the time. but Wales had NO established system of support for HoH or deafened people because LA's/DWP were refusing to cover the costs of it demanded by qualified people, unless we learn to sign, tough.
I duly made a claim to my local authority explaining that as the DWP had blocked deafened people and in many areas removed even the sole basic DLA allowance which was nowhere near paying for ONE hour of support a month let alone as and when, or getting any other allowance for that support despite acknowledging I was profoundly deaf and text-dependent they said 'Sorry being deaf is not enough, you have to be blind as well' (Pass me a sharp stick and a guide dog someone !).
Perhaps the NADP could address this issue? If a claim was successful in enabling deafened people to claim DP, that can create demand, then a viable system not extant at all now could be developed. I queried the DP issue and the DWP/Government said nothing to do with them its a local authority 'discretionary' benefit. I said it was more a 'discrimination' benefit. The site criteria clearly suggested deafened people were identified as an area needing and qualifying for that support, it was LA's deciding to use their 'discretion' to refuse. So discrimination, there is no mention that only deaf-blind qualify. LA's were using 'discretional' options to operate wholesale cuts to support by targetting us.
It was further compounded by the fact my partner born deaf and a sign language user is enabled with her support but I am denied mine. Is this not discrimination (Discuss!). If the DWP AND the Local authorities/health services are also failing to provide text/lip-speaking support why hasn't the NADP raised this issue for us? Is the NHS using IT'S discretion to deny us too? Being asked to bring relatives or a 'carer' is an insult (As well as lawbreaking).
Other blocks for help were based on 'Wales controls the NHS there so again nothing to do with anyone else take it up with them'. I did just that, and there were NO RECORDs extant the welsh NHS had a system of deafened support at all to access. Very obviously asking the social services was a waste of time because you would need support to follow them and the SS had already refused that.
All I am reading at the NADP is lip-spoken tours of stately homes in middle-class areas of England. Please explain your relevance to me. Not a member, so you don't care? I suggest you don't ask me to join."