Month: March 2013

Substance abuse and the Deaf

Unfortunately, there has not been a lot of research done on substance abuse in the Deaf Community.  It tends to be as problematic a topic as mental illness or domestic violence.  People in small, insular communities where there is a shared language and culture, one finds that acceptance is everything, so problems tend to be shoved under the carpet as long as possible.  To be identified as a problem is to potentially lose one’s entire life.  It is as traumatic as being banished from a Native Alaskan village or from an Amish community.  The only difference is that the person who is banished has the capacity to speak English.  The Deaf Community is the only community one moves into and never emerges from again.  Even

credit: fidelisprivatus’ media,

with Cochlear Implants the individual is never fully hearing – nor potentially, fully Deaf.   No wonder talking about everything from HIV/AIDS to alcoholism is taboo.

Alcoholism is the most predominant form of substance abuse.  Alcohol consumption is socially acceptable and alcohol is easy to get, even for juveniles.  Substance abuse involves a greater amount of what sociologists call “social deviance” because individuals have to break the law to get their drug of choice.  Alcohol is often the gateway “drug” to everything from cocaine to prescription drug abuse.  It is rare to see someone who is a drug addict who does not use alcohol in a pinch to keep the jitters of withdrawal away.

Since the government does not track alcoholics, we tend to say that between 1 in every 10 drinker develops a problem with alcohol.  It could be 1 in 7.  Perhaps they are “problem drinkers” and perhaps they end up full-blown alcoholics.  Most, but not all scientists believe that alcoholism is a chemical disease because of how it breaks down in the bodies of alcoholics and how it affects their brains.  It appears to be inherited and twin studies indicate that twins separated at birth tend to both be alcoholic or non-alcoholic regardless of their upbringing.  Thus, it is not a moral problem.  It is not an issue of willpower.  However, in society, we view alcoholics and addicts as weak willed who could pull themselves up by their bootstraps if only they loved their family enough.

credit: Randall3515,

Alcoholism is progressive, chronic, and ultimately fatal.  A variety of studies indicate that alcoholics die between 10-15 years earlier than non-alcoholics.  This doesn’t include suicide, car wrecks, accidental death, and homicides, nor does it reflect the mixing of drugs and alcohol (called amplification) that takes place today that can equal overdose or death.   Addiction to drugs – street drugs and prescription drugs – are similarly progressive, chronic, and ultimately fatal – for all the same reasons.

So where does the issue of Deaf addiction to drugs or alcohol make it any different from hearing addiction to substances?

If one is a Hispanic, Spanish speaking alcoholic, one can either learn English or find treatment facilities where there are Spanish-speaking staff members.  If one is Deaf one cannot learn to hear.  And there are vanishingly few treatment options for the Deaf.  In fact, while there are plethora of Spanish-speaking professionals and services in America today, there are virtually none for the Deaf.  Why is this, when the Deaf are allegedly protected by the Americans with Disabilities Act (“ADA”) and a mere language oral language is not protected?

Largely, because Spanish communities are far larger and more pervasive.  We even have Spanish Language TV today.  The same thing applies to many other language groups in the United States.  There are, for instance, cultural centers for Laotians, Vietnamese and Tibetans in the Boston, Massachusetts area.  There are no “cultural centers” for the Deaf.  Most Deaf or Hard of Hearing (HoH) individuals are born to hearing families.  Most hearing families do not learn American Sign Language (ASL) or Signed Exact English (SEE) or even Pidgin Sign (PE), although they may develop a sort of Family Sign developed at home.

In the past there were no hearing tests administered to infants at birth.  It was not in the least unlikely that the deaf child would be called “retarded” or the HoH child called willful, stubborn or air-headed.  Children who were born profoundly deaf from maternal illness – from lead poisoning to illness such as measles – were not only denied in utero exposure to sound and early exposure to oral or signed language – many of these children suffered from other problems, from visual problems to brain injuries.  So the child could not only be deprived of sound and language, they were also deprived of all sorts of normative experiences.  Children born with brain injuries may need intensive assistance to reach normal milestones.  Today we have Early Intervention, but that was not always the case.

At the Symposium on the Deaf, Mental Illness and Criminal Justice, I learned a great deal more about what the differences are between “low functioning” deaf and “high functioning” deaf.  Ultimately, brain injury, especially in combination with early language deprivation can lead to a lifetime of problems due to an inability to understand societal norms, including an inability to empathize with the emotions of others.

From studies done in the United Kingdom, likely not much different from the United States, low functioning individuals have possibly a 35% chance of mental problems, mental illness and issues with substance abuse.  And due to their lack of English skills – and often ASL, SE, or PE skills, being able to understand a problem or communicate emotions or frustrations are limited. Only in the UK there is an in-residence program of approximately 18 months where issues such as these can be addressed.  We have nothing like it in America.

Further, unlike hearing individuals, the Deaf Community is small.  Again, there are no precise statistics kept on the Deaf/deaf.  We know that about 1 out of every 1,000 children is deaf or profoundly hard of hearing.  Cochlear implants and hearing aids notwithstanding, those children are going to have hearing problems all their lives.  Assuming 315 million people in the United States that gives us a minimum of 315,000 Deaf and HoH.  There may be as many as half a million.  Compare to Asians (in general) and they are 4% of the population, well over 1.25 million.   There are about 45 million Spanish-speaking Americans (first or second language).  There’s a reason why there are fewer resources for the Deaf.  We don’t have the numbers to be a political force.

So – we have a few issues:

  1. We’ve got a small, insular Deaf Community.
  2. The Deaf community is protected by the ADA, but not large enough to have political clout.
  3. There is little financial incentive to create treatment centers for mental illness or substance abuse in the Deaf Community.
  4. Further, many individuals with serious drug or alcohol problems may have poor language and expressive skills in ANY language, with a concomitant problem in expressing emotions.
  5. Add to that the fear of losing their place in the local Deaf Community and you’ve got a powder keg looking for a match.

Individuals with substance abuse problems often end up on the wrong side of the law.  Go to enough open AA and NA meetings that are discussion groups and you will find out that many, if not most, substance abusers end up on the wrong side of the law – often more than once.  Not just driving under the influence, either; there are violent fights, thefts, and a variety of other crimes from selling drugs to burglary or domestic violence.  And that’s in the hearing population.  These are people who generally have a good command of their language, have a decent education, and who have often had successful careers before bottoming out.  Imagine, then the problems associated with being Deaf or seriously Hard of Hearing, having limited language and expressive problems and a substance abuse problem?

In Massachusetts there are a few AA and NA meetings in various locations with interpreters for the deaf.  There are no intensive inpatient treatment programs focusing on ASL, SEE or PE speaking individuals.  There is no funding for interpreted AA or NA meetings in New Hampshire.   Many Deaf individuals with drug and alcohol problems need more intensive treatment than 12 step meetings  and there is very little nationally for the deaf  and what there is may be very expensive and so far away they can’t get there. Follow up becomes problematic and they may be rejected in the local Deaf community upon their return.

Because of the lack of treatment options a disproportionately high number of deaf individuals in need of treatment end up in trouble with the law.  And when they do, the legal system is woefully unprepared to deal with them, which is a story for another day.

For those who wish I’d speak a bit more simply or plainly, I can only say I wish I had the gift of plain speaking of the old timers at AA.  Not yet.  🙂

Do you hear what I hear?

As a Hard of Hearing person with progressive Sensorineural hearing loss  I not only struggle with a gradual decline in hearing, but  I hear things that are not able to be heard by anyone else around me. Part of this is tinnitus, a phantom form of pseudo-sound manufactured by the brain, but I also hear other sounds that don’t exist anywhere else except in my head.   (Stop looking at me like that!)

In general, when people hear sounds that are not real, we start suspecting mental health issues, but for the Hard of Hearing phantom or pseudo sounds are often a way of life.  Tinnitus can be anything from a low, rumbling noise to a high squeal.  It can interfere with what hearing we have left.  Sometimes my hearing aid increases tinnitus, sometimes it helps suppress it.  There is no real rhyme or reason to it.  There are times I have ringing, buzzing, and high-pitched squeals that could be considered a form of torture that go on for days.  There are times I am blessedly free from them.

This week, at the Symposium on Deafness, Mental Health and the Criminal Justice System at Bridgewater State University in Bridgewater, Massachusetts, I was thrilled to learn I’m not really crazy  after all.   Dr. Brendan T. Monteiro of Manchester, England,  a specialist in forensic mental health and the Deaf spent part of his lecture on pseudo sounds that are not psychiatric in nature.

As someone who has heard a cat say “Meow-sha” for “Marsha” when I knew the cat was meowing, I can’t tell you how thrilled I am to know this is normal!  I may or may not be “normal” but at least my strange hearing experiences are not abnormal.

An individual who has had at least some hearing during their lives has had exposure to music and voices.  Our brains are naturally wired for both sound and vision, so it is not a surprise to find that in a state of sound deprivation our brains  will fill in the blanks for us.  So kind of it to do this for those of us with hearing loss.  So scary when it happens and we wonder if we are losing our minds.

Not only does the brain attempt to fill in what we don’t understand of the spoken word, it can also add a little spice to life by adding unwanted tinnitus sounds that fill our auditory field in a most annoying and unwelcome manner.  We can  also hear vaguely formed music that isn’t quite recognizable and may be loud or soft – often on the very edge of our hearing – while there is no music playing. On the other hand, it might be quite loud and obnoxious and still not quite recognizable.  It may be the brain interpreting the fan on the refrigerator as music or it may be purely filler noise such as the tinnitus.  As long as the music is not perceived as a message from a deity or someone or something else – and as long as we are not going to react to it and harm ourselves or others it is a no harm/no foul situation.  Every now and then the bonging of the car door (when opened with the key in the ignition) sounds like a major chord.  I thought it was a problem with the hearing aid – apparently not.

Another form of pseudo sound is hearing faint conversations or voices that are not really there. Again, this may be some faint sound we’re hearing that our brain is attempting to make sense of, but unless we are getting “messages” that are encouraging a behavior or causing fear, this is a natural thing and not to be confused with a psychiatric condition. It can be rattling, though, if we are home alone.

And then there is the issue of the squealing hearing aid.  Mine has had terrible feedback as of late – to the point I am wearing it less and less because of the infernal racket.  I went to the hearing aid tech today – it was squealing so loud in the waiting room that he could hear it across the room and then – as soon as he started looking at it – it subsided and refused to squeal again.  It is like the washer that malfunctions until you call the repairman, pay $100 for the visit and then works just fine…   So far, so good.  (crossing fingers)  I suppose.

Do you hear what I hear?  If so, you may be suffering from hearing loss.

Andy in C Minor

I don’t watch a  lot of TV, but I was spending some quality time with the boob tube yesterday when I happened upon an episode of Cold Case (reruns) called Andy in C Minor dealing with the murder of a Deaf high school student at a Deaf School.  In large part I was impressed because the actors who portrayed the Deaf were Deaf.  I won’t get into the issue of how there always seems to need to be a Deaf/Hearing romance (sigh) since most Deaf/Hearing relationships end up as train wrecks.  I was pretty much okay with this until the cops start interviewing people without the benefit of a professional Interpreter.

Not okay.  Not even a little bit!  Not to mention trying to use a school administrator as an interpreter while she was also one of the suspects.  What the hell was going on there?  And then there was the “they can read your lips” as if these are miracle Deaf people – parents and students – who can understand any word at any angle.  By the time the episode was over I was hammering the Internet to find out when it had been taped.  It’s old – 2008.

For all the good parts – for all it attempted to portray the issues facing the Deaf Community, the conflict over CI’s and how a person can end up not Deaf and not Hearing, for all the fact the actors were Deaf and believable – the ultimate flaw of not providing a certified legal interpreter in a murder investigation of all things, sent me right over the edge.  If it were a new show I’d probably write a letter to the producer and ask him to produce something showing a Deaf suspect being abused and railroaded – however, that would not jibe with the cast’s “good cops” image.

I’m glad I fell over it by accident, though.  I wonder what else is out there, misinforming the American public about the Deaf and Hard of Hearing who use ASL.