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Russ is an International Music Therapist and Vibroacoustic Therapy Practitioner. Born severely deaf, Russ has Usher Syndrome, a genetic condition that causes a deterioration of sight and hearing, leaving you deaf and blind. He is registered Deafblind and uses two cochlear implants (CIs).
Alongside his wife, Riitta, Russ has been a member of the social-haptic communication research group at the University of Helsinki, Finland, since the early 1990s. Russ has developed and taught social-haptic communication, haptices (touch messages) and is a founder, developer and advisor of using haptices in everyday life. Along with Riitta, Russ has published various books on social-haptic communication.
Russ is a songwriter and musician who has published a music CD and DVD, and has been involved in the development of a portable music floor known as the Tac-Tile Sounds SystemTM with the University of Sheffield. His main focus is with dual-sensory impaired clients, and he has published various articles on musical perception using cochlear implants and vibrations.
Through musical expression and therapy he applies a concept and understanding of how people who are losing their hearing and sight can feel musical vibrations. He also gives international presentations as a deafblind music therapist with two cochlear implants.
Russ' Musical Journey
In the Beginning...
I was born severely deaf, which means I was unable to hear much of anything. I could hear some sounds, particularly low frequencies, but was unable to ascertain what those sounds were. I was therefore unable to hear normal conversation or hear consonant sounds, for example. I had my first hearing aid from the age of four and a half as before this doctors didn’t believe I was deaf, even though my mum knew something wasn’t right. I remember getting my first National Health hearing aid, a small box held in a bra-like harness around your neck; not the small discreet hearing aids of today. Needless to say, I was teased!
As a child I used to watch Top of the Pops and would imitate the musicians - air guitar as it were - and mum and dad then bought me a toy guitar. Dad also used to play the Beatles, among many others, and I’d watch Pinky and Perky and Bill and Ben, so these were the first songs and sounds I heard with my hearing aid.
At primary school, I had the opportunity to learn the violin at age 8, but as I had a high frequency hearing loss, I wasn’t getting much out of it. I always remember Bach’s Brandenburg Concerto - I just couldn’t enjoy it as I couldn’t hear the high frequencies. This is why in the school orchestra, I chose to play the double bass, which in the future led me to play the bass guitar in a jazz band.
It was also at this age that I started using two hearing aids.
We used to have a piano at home that I tinkered about
with, and started having piano lessons at age 10 where I learnt
to read music. I took to this like a duck to water, mainly
playing classical pieces and making my way through
the grade exams.
When I was 13, my dad bought an electronic Lowrey organ with
two keyboards and bass pedals, which I taught myself to play.
I loved the instrument, and tended to learn popular songs by
listening to the original and working out how to play it,
enjoying feeling the vibrations through the bass pedals.
For music, it’s the understanding of chords, arrangements,
phrasing, melody, rhythms and the art of how a song is
layered that are all vital skills for any musician, and I was
developing my listening skills through the hearing aids.
At the same time, I also started having lessons to learn the guitar, which I also took to very easily, and I was learning quite complex pop songs, graduating from strumming to intricate finger-picking techniques.
What you must remember is that hearing aids do not provide normal hearing. The sound is coming from outside the ear and so sounds more ‘at a distance’ and distorted. It also amplifies everything and doesn’t filter sound in any way. So, listening to and learning music with severe deafness and hearing aids is by no means straightforward or going to be the same experience to a person with normal hearing.
I started singing by joining the primary school choir when I was about 8 or 9. I was concentrating more on learning instruments at that time, but when I was about 14, I wanted to start singing along with my guitar. I never had singing lessons as I was very self conscious about it, but I would learn songs at home, even picking out harmonies, and I taught myself. It was at this age that I wrote my first song, ‘You and I’.
Sight Loss and Music...
After being placed on a cabinet-making course, I realised this was not a viable career path or what I wanted to do. I applied for and was awarded a grant to attend Dartington College of Arts doing a music foundation course, in preparation for a music degree. It was here that I studied to grade 8 piano and developed my technique to a very high standard.
By this point, I needed magnifiers and large print in order to read the music, and as such I started writing more of my own music and playing by ear. The college helped me improve my composition stills, and as a result, I wrote ‘Mystic Lady’, and ‘Going Home’.
I was registered blind in 1991. I also met Riitta in this year at a Deafblind conference in Sweden, as she was working for the Finnish Deafblind Association. Riitta has changed my life; she inspired me to write more songs, and supported me in getting my life back together and in a direction that I wanted. Through my songs, I also started to regain my confidence and believe in myself again. Riitta encouraged me to perform and sing on stage with my guitar, and I started collaborating with others, which helped to develop my ensemble composition skills further.
Before Cochlear Implant (BCI)...
Sadly, I stopped performing as my hearing deteriorated suddenly by 20dB. It was a bit like abruptly turning the volume down on your TV to half. Sound was more distorted and musical sounds changed overnight. This happened two weeks before my final exams as Dartington. It made communication more difficult as my sight was also worsening.
I worked with the University of Sheffield developing the TAC-TILE Sound System (TTSS), a portable music floor for people with hearing impairment, helping them to feel and hear different styles of music. Let’s just say, my cabinet-making course came in handy! The TTSS was selected as an 'innovated design project' and was featured in the Millenium Dome under the ‘Spiral of Innovation’ section by the Millenium Design Council.
I completed a foundation course in 1997 at the Sibelius Academy in Helsinki for ‘Music Therapy’ and two years later qualified as an International Music Therapist.
Despite my continued hearing loss and deteriorating sight, I was determined to continue with my music. I also learnt I was a suitable candidate for cochlear implants (CIs), but in case you’re not aware, the operation for cochlear implants totally destroys any and all residual hearing one may have left. Unfortunately, back in 2003, the experience of music for cochlear implant users was extremely limited. A normal ear has a frequency range of 20Hz (low sounds) to 20,000Hz (high sounds) and can detect fractional differences in pitch, giving a complete and intricate experience, especially when it comes to music. Whereas a CI user can only differentiate much larger jumps in pitch, more like every 80Hz. This makes it hard to separate different notes and pitches, and the difference between major and minor chords. It’s impossible to know a male voice from a female voice, melodies become monotonic, and sounds are robotic and coarse. All of this is inherently not condusive to enjoying music.
So, I was facing a dilemma. To enable to me to communicate, hear people speaking and function socially, I really needed to turn to cochlear implants, but in doing so, was I forever sacrificing my music?
"There was a time Russ felt he would never be able to do music anymore..." - Dr Riitta Lahtinen, Communication Researcher
By this time, I had written enough songs to produce a CD. I approached my friend, Jon Rosslund from Norway, to help me produce and record my music in case I was never able to sing or play again after the operation. I recorded one song, ‘Come back to Me’ as a demo, which led onto recording a 12 track album called ‘Reflections’. This is what I refer to as BCI (before cochlear implant).
Here we have two examples from that album, ‘You and I’ and ‘Hunter’s Cry’. You will notice that my singing voice BCI is somewhat pitchy and that I slide in and out of each note, as I was not able to hear myself well to stay in key. You can also notice that my pronunciation of words is not as distinct compared to a hearing person, as I was unable to hear clearly, especially consonants; listen for the word ‘lonely’ in Hunter’s Cry, for example. My diction can also be a little unclear and my voice can sound monotonic.
Compare this with recordings of the same songs from my ‘Warm Summer Days’ album recorded from 2006 to 2008, two to three years after my first cochlear implant surgery. My diction has improved as has my ability to pitch and hold notes. This is ACI (after cochlear implant).
“It’s a mystery to the experts that Russ can sing and perform music at all with cochlear implants.” - Dr Stina Ojala, Speech Scientist
After Cochlear Implant (ACI)...
This level of improvement did not happen overnight. The operation for my first cochlear implant on my right ear was in March 2004. When I first came home from the hospital, I was initially suffering with constant high pitched ringing in my right ear (tinnitus) for the first week, which caused disorientation and bad balance, as well as just being highly irritating. After 6 weeks, the cochlear implant was switched on; everything sounded distorted and people’s voices all sounded like robots. As soon as I came home from the switch-on, I started to try playing music as I was curious and impatient. I tried the Beach Boys and could recognise the rhythms, even if I couldn’t make out the melodies. The worst thing was when I tried to play the piano. It sounded awful, like a honky tonk. So, I stopped playing the piano and focused more on the guitar, as I could hear the pitch and tone more clearly.
Over the following months, I could gradually make out more and more. Pitch levels became clearer, and after a year I could make out major and minor chords. I could start hearing melodies and male voices from female voices. It was a time of regular adjustments and constant re-training of my brain. It could be difficult and frustrating, but I was determined, and so decided to re-record the Reflections album as Warm Summer Days at this time.
In 2011, I had my second CI on my left ear. This time, I had what was called a ‘soft surgery’, which they explained would retain some of my low frequency hearing. Although, in reality it has caused an element of imbalance with my right ear. After going through the same adjustment and brain re-training process, I found my singing voice was more expressive and richer in quality. Pitch was improved even further and I was able to add vibrato. As you can imagine this was an incredible moment, being able to hear myself singing better than ever. I started singing with other musicians and performing with live bands. This lead me to create a DVD documentary ‘Musical Perception of a Deafblind Cochlear Implant User’, filmed at Finlandia Hall in Helsinki.
"Russ demonstrates just what can be achieved as a deafblind person with two cochlear implants, and he inspires others." - Dr Stina Ojala, Speech Scientist
Performing live music for me is an exact science. I use a hat with a wide brim, which helps to deflect unwanted sounds and to resonate my own voice back to me. My position amongst other band members is extremely important to ensure I can still hear myself. I may turn down my left ear, which is aimed in the direction of the drums, for example, and turn up my right ear to hear myself. I have to keep my foot on the microphone stand to ensure I don’t move too far away, especially when I’m playing the guitar and have no hands free. I often use my nose to feel the microphone!
I am continuing to study in Finland, researching how deaf and Deafblind people perceive music from their bodies and hearing aid devices, analysing vibroacoutics and music therapy, and the application of musical perception for cochlear implant users. I have qualified as a Vibroacoustic Therapy Practitioner, researching the application of low tone frequencies for pain relief and relaxation.
The point of my story is that anything is possible. People with deafness and cochlear implants can enjoy music, both listening and performing, despite people telling us it’s not achievable. Life can be challenging, but if you have the desire, just go for it, and help break down those misconceptions, educate others and be an inspiration. As my dear mum always said, ‘never let the buggers get you down!’.
"If you want to achieve something, you have to try... you don't need to be perfect. Do it your own way!" - Dr Riitta Lahtinen, Communication Researcher
I first noticed I had a vision problem from the age of 13, when I was doing a paper round and couldn’t see properly in the dark. However, I just thought this was normal. By the time I was 18, I fell off a barge gangway into a ditch because I was starting to get tunnel vision and couldn’t see properly. At 21, I was diagnosed with retinitis pigmintosa (RP) - which is a combination of tunnel vision, night blindness and light sensitvity - along with Usher Syndrome, a genetic condition that causes a deterioration of sight and hearing, leaving you deaf and blind.
I worked as a computer systems analyst/programmer during my 20s, but unfortunately had to take early retirement when I was 30 due to failing sight. This is what I refer to as my ’crisis years’ - 1988 to ’89. I was in a black cloud - depressed, dejected and sadly suicidal. As well as stopping work and coping with my deteriorating sight and hearing, I was also getting a divorce, and these difficult experiences caused me to dive back into my music. As a career change, I wanted to get into music therapy, but my career resettlement officer told me I could not do music therapy as I was deafblind, which frankly just made me more determined to prove them wrong!
Cochlear Implant Family Day - Helsinki
On 7th March 2020, Russ performed at the Cochlear Implant Family Day in the Russin Musiikkiesitys Concert Hall in Helsinki, Finland. The day was to raise awareness of experiencing music with a Cochlear Implant and involved talks and a musical performance. Along with his colleague, Juha, Russ played the guitar and sang three songs of his own composition: Let's Be Together, A Hunter's Cry and DeafBlind Blues. The performance was a success with many positive comments, including admiration for Russ's ability to synchronise and balance playing, singing and rhythm. Video credit: Ville Pohjonen.
Deafblind in Brazil
In August 2015, Russ and Riitta were visiting Brazil. The day before they were due to leave, Russ developed a life-threatening skin infection and was admitted to hospital. In this video, Russ shares his experiences of being a deafblind patient in Brazil, along with some simple ideas that could be adopted back in the UK.
Articles & Resources
SpaceFlight Magazine Vol 62
British Interplanetary Society
By Russ Palmer - 2020
There are over 11 million people in the UK alone with a long-term limiting illness, impairment or disability. So how do they get to experience the Space Age?
SpaceFlight Magazine Vol 63
British Interplanetary Society
By Russ Palmer - 2021
Visually impaired people can access resource materials in various ways, to gain a wealth of knowledge on space exploration and the Universe. Information can be made more accessible via models and one’s own body.
My Life Journey with Usher Syndrome - British Association of Teachers of the Deaf (BATOD) Magazine
By Russ Palmer, Olav Skille, Dr Riitta Lahtinen and Dr Stina Ojala - 2017
Feeling and experiencing the vibrations produced by music helps to understand what the concept of music is. Music and vibroacoustic therapies have overlapping effects; music is for listening while vibroacoustic therapy is similar to physiotherapy.
By Russ Palmer - Jan 2021
Growing up with Usher syndrome has been quite a
challenge. Nevertheless, there are some aspects children
and adults might like to consider in learning to deal with this condition.
By Dr Riitta Lahtinen, Dr Camilla Groth and Russ Palmer - 2017
This pilot research describes and analyses six different deafblind people sharing their interpretation of five statues in vocals, sounds and written descriptions based on their haptic experiences.
By Russ Palmer and Dr Stina Ojala - 2016
The concept of feeling vibrations using different vibroacoustic technologies...
enabling people to experience low tone frequencies for different kinds of relaxation
techniques... later used in the areas of music therapy.
By Riitta Lahtinen and Russ Palmer - 1994
This paper includes an evaluation of a real- life situation to illustrate how different forms of techniques may be used to assist families who have a "hearing-impaired Usher type 2 or 3 person", so that their quality of life can be improved.