In the late eighties, I joined a shared office, where screens were introduced to solve noise problems. I noticed that I could no longer hear my colleagues properly when the screen obscured my line of sight. I was referred for audiology tests.
I was surprised when they informed me that I had a substantial hearing loss in both ears, in a frequency pattern typical of long standing loss, probably since birth or infancy. While lifestyle and noise was a factor, my deficit appeared to have been from infections. My bafflement during my early years, slowness to learn how to read and other problems may have been down to impaired hearing all along.
My hearing loss has progressed from moderate to severe. I hope technology continues to keep pace as my hearing grows worse.
In the late 90’s I changed career from commercial project management to health and social care. While I was retraining, my job seeking arrangements and benefits process were difficult because of the insistence to use phone calls to make arrangements and discuss my capabilities. I asked for support to get a better phone. The disability employment advisor was unable to offer help, unless I got a job. I felt this was Catch 22.
Eventually I began working in prison. In private conversations there were sometimes some serious misunderstandings with prisoners who were understandably upset when I misheard them. I developed some positive habits to ensure that I encouraged clear communications.
I also engaged in some speech therapy from time to time, especially when I changed my gender role. This encouraged me to change my communications style and make sure that I clarified how I would like people to communicate with me.
Our culture has grown more noisy as population and traffic have increased, more people occupy the same work spaces, more pressure on services, less time. People often have doorway or corridor conversations, which does not usually support clear, organised, purposeful communication. I was advised to invite people to sit, face me and talk slowly and clearly, explaining why I needed them to do this. Would it be good if everyone did this?
Then I got a job in probation.
My medical assessment for the probation role identified the hearing issue and recommended an adapted phone, a need which was overlooked when I started work. I passed my review after 6 months, at which time my manager discovered I had not received the adapted phone. My manager pursued HR, who asked me what I needed and I explained that I needed a phone with good adjustable volume and a good loop system, that I could use when at my desk in between client appointments, explaining that I moved around a lot. They sent me an old phone covered in dust that had been lying around on the shelf, which was of the type that stenographers used with headphones, which were missing, and this was entirely unsuitable. It made me feel second rate. I e-mailed HR to explain what I needed and asked them to investigate with the IT dept what phones would be compatible with their system that met my needs and then send details of what they proposed to supply by e-mail. Their response was to phone to ask what I used at home. I explained that the environments were very different, because my home phone was not in the middle of an open plan office with 4 other team members surrounding me, but nevertheless I had a good volume adjustable phone that met my needs. I suggested two web sites that provided suitable advice regarding adapted phones, and also suggested that the individual HR member should learn something about hearing loss and gain some IT advice before contacting me again. They assured me they were conversant with all kinds of diversity needs, but nevertheless continued to be obtuse about the phone I needed and continued to phone rather than e-mail me. I had to make a complaint about this before an appropriate phone was provided. The HR manager was annoyed and said that once the phone had been provided, he expected to hear no more from me. This typifies a problem I frequently encounter: it is assumed because I am deaf that I know all about support aids, including the variations that suit different types of telephone systems or sound systems. It is also often implied that if it does not work, then I am at fault.
Practice may have improved as equalities law has been strengthened but poor practice is still widely noticed, especially in seminars, training and the like. In one training session, the trainer advised us to form small groups in circles to conduct an exercise then proceeded to give further instructions, which were addressed to the backs of some of us. There was widespread confusion about what we were supposed to achieve. I suggested that this arrangement was not suitable, explained my hearing problem and the trainer then asked what I would suggest. The trainer could not understand why I objected, or why I was insistent that communicating clearly was the trainer’s responsibility
Since qualifying as a teacher, I notice poor practice more often. For example, trainers may anticipate interactive exercises and split the group before providing clear instructions. The resulting confusion can be easily avoided if the trainer takes responsibility for clear communication and arranges the learning environment optimally.
I have recently experienced a senior local authority manager, delivering safeguarding training, who announced that he tends to mumble and he requested that if anyone does not hear properly they should speak up, I challenged this immediately and asked him to take responsibility for clarity.
In 2007, after struggling for a while with a frozen shoulder condition, I received an assessment in my workplace by an occupational health professional, who noticed that I used hearing aids She subsequently demonstrated a portable radio based loop kit. This provided a remote element that amplified and transmitted a signal to the receiver. The receiver amplified nearby sounds and delivered good sound via a neck loop to my hearing aids. I wept when I first used it because for the first time in my life I felt a sense of belonging and participation.
I was impressed and said that this must be a new development, but the OH assessor said that they had been around for at least 10 if not 15 years.
The diversity culture in my probation area was changing, a new chief prioritised equalities, and we created a new diversity forum at area level, with participation at regional and national level. I became a representative in LGBT and helped to form a new national disabled network. We also adopted a new mentoring model based on diversity, in which I trained, and my own awareness grew as I practised the model and supported others. This consolidated my experiences of being a representative in disabled and LGBT networks in my trade union.
I was therefore in a position when I became a senior manager in health and social care services for homeless people to appreciate the importance of diversity and energetically support the development of good practice, contributing to training development and the growth of diversity networks that stimulated our organisation to improve its rankings as an employer year on year.
My adapted phone was on the desk and functional at the start of my first day. The health and safety deputy helped me to set up my workstation, which although open plan, was at the end of a row to minimise surrounding noise. The office manager followed up with my manager at my 3 month review. I was encouraged to use any free office for one to one communication. Great! This is progress!
Then I watched these gains erode as pressure on public expenditure caused cuts and loss of staff, consolidation of facilities, office moves that were made out of expediency rather than good planning. The phone that worked so well did not function at all on the exchange in my new situation. I ended up setting up better facilities at home.
I am currently involved in health and social care development at local, regional and national level and diversity is still a priority. I support regional NHS developments towards more coordinated accessible services that make sense to individuals.
I recently undertook new audiology since I had moved to a different region and my hearing was definitely worse. My hearing aids were out of date. I received a new assessment, new aids, was measured for new moulds and referred to a consultant, because the hearing loss in my left ear was far worse than in my right ear. They needed to investigate. I suggested that prior records might shed some light on whether this was a recent development or had been the case all along. The appointment for the consultant (in the same trust) ran 90 minutes late because they had no records, and needed a new assessment which took a long time. They did not retrieve their own records of the recent test and when I suggested they also retrieve records from my original audiology dept they said they would try, but meanwhile due to the lack of records they thought to be on the safe side they would refer me for an MRI scan! Subsequently, they were unable to obtain the records and asked if I would do so. I contacted the health trust where I previously received audiology services. After 3 requests and conflicting replies (varying from “No we don’t do that” through “fill in this 6 page form” to “get the consultant to request this” even though I attached the consultant’s letter to my request!), finally the consultant confirms that the records have been received. So much could be achieved for all by better communication. I continue to maintain that problems in services affect everyone but tend to affect some minorities so much more, that it becomes a problem in itself.
I still use the same radio-based kit today and I have discovered that I can use ordinary “in the ear” MP3/phone headphones from the receiver directly to my ears, which is sometimes better than hearing aids. Loops are prone to interference from a variety of devices and systems, such as hotel lighting.
Recently, in working as a patient and care representative with the NHS, an audiologist approached me at an event, after seeing how I was deploying the radio-based kit unconventionally to focus on round the table conversations. She said she was worried (my method is not conducive to longer term protection of my hearing), and after I explained about recent difficulties with new aids and mouldings, she offered to help me to find better kit. Fantastic!
This whole experience is an exemplar regarding incorrect assumptions that a disabled person somehow automatically knows what they need.
Out of the thousands of untimely deaths among benefits claimants, I do not know how many are disabled, and the DWP is less than forthcoming with these data. I think it might be a high proportion, possibly the majority, especially when taking into account the recent changes in local taxation (the “bedroom tax”) that on top of benefits restrictions have had a disproportionate effect on heavily disabled people who often use a box room to store mobility, continence and other equipment and consumables (or perhaps we should say, rather, that they allow their health and social care service providers to store in their homes such equipment and materials as are needed for delivery of those services, creating the possibility of reclaiming a charge from the providers to cover the tax on the room used to store their provisions).
It is also my experience through delivering and managing health and social care services that a large area of disability is suppressed from awareness; due to the peculiar effects of stigma, many people conceal awareness of mental health problems, but even if they disclose this, availability of assessment and treatment, and availability of community support, including from employers, falls far behind the needs of what is a significant proportion of the population, who have a higher prevalence of early mortality than average in the general population.
When I worked in prison, I attended a staff training day, on the subject of mental health awareness. Among the speakers, two parents described what happened to their son. He showed great promise, but developed a mental illness that interrupted his career. After a member of the public complained he had followed her and appeared to be disturbed, he was taken into police custody. Though he had not committed any criminal offence, he was taken in for psychiatric assessment. Due to pressure on availability of police cells, he was mistakenly transferred to a local jail. Another prisoner, described as a member of combat 18, an extremist cult, was put into the same cell and murdered him. A prison officer asked “What would you like us to do?” and their answer was “Try to help. Go the extra mile.” I worked late that night, identifying and prioritising clients with indications of mental health problems, reviewing care plans and offering new appointments. The training changed my life and my practice. Subsequently, in probation, I instigated research into complexity of needs and identified factors such as trauma that were more highly prevalent in those with more intense needs.
From my work in prison, probation, homeless services and in health and social care in the community, I have learned that disability is one of a range of factors likely to make it more difficult for individuals to maintain wellbeing, sustain congenial relationships in the lifestyle that suits them and realise their potential. Disability may combine with other factors to cause social exclusion, such as through experiences of trauma, abuse, victimisation or mental ill health. These may push vulnerable people further into problematic issues such as crime, addiction and illness, often exacerbated by poor housing, lack of appropriate employment opportunity and lack of integration of services. These experiences formed the kernel of my appreciation of vulnerability of minorities, their susceptibility to social exclusion, consequent exploitation and abuse, trauma and loss. Feeling different and being treated differently often has disastrous consequences for the individual. I would contend that we cannot afford these as a society, either from an ethical or moral standpoint, or as a matter of safe, efficacious and efficient socio-economic practice.
Some employers take a free ride, imposing difficult conditions and failing to provide reasonable support to employees, and the resulting erosion of wellbeing causes health problems, the cost of which is picked up by the public health system.
Similarly some private landlords take their profits while providing sub-standard accommodation causing health problems.
Nor are local authorities blameless in this regard, making short term savings that cause longer term problems, with the public and particularly our health services paying the price.
In my voluntary roles with the NHS, End of Life care alliance and Healthwatch, and in my prior roles with St Mungo’s delivering services for homeless or in my work with the criminal justice system it became pretty clear to me that I am regarded not as a liability but as an asset. My experiences acquired meaning. I could use them to establish more effective relationships with clients and colleagues, improve practices and instigate positive change.
When the goal is to deliver services that are personal to individuals, there is a synergy between recovery values, professional development, diversity and leadership that conveys enthusiasm and empowerment to support and encourage staff to develop their individual qualities.
I know from my own activism that one repeats similar messages year after year, seemingly without effect, but suddenly it seems like we have turned a corner, started a new page, people are listening, discussing and responding as if for the first time, and socially a transformation appears to be taking place in wider society or a new law is passed. And when we look back it seems incredible that just a few years ago, things were totally different.
My hope is that somehow, this brief essay on my experiences regarding disability will strike a chord, will strengthen the resolve of someone, somewhere to take some positive action.
I argue from an ethical standpoint that society has a moral obligation to address these issues and help put right what went wrong for individuals caught in these situations. Our public services and institutions have a legal obligation to promote equality, to help avoid recurrence of these problems in future.
However, I also argue from a financial standpoint that we cannot afford to keep picking up the colossal bill for damage, social wreckage and waste of resources caused by social exclusion. Our public services sustain these consequences daily at vast cost to us all. Much of it is avoidable, preventable or remediable, if we improve how we treat individuals and address systematic oppression.
I wrote to my MP by email today, providing my address, and in view of my hearing impairment I asked for e-mail or face to face communication. An automated reply insisted that communications would only receive further attention if a phone number was supplied. That is an example of systematic oppression. The system was established for very sensible reasons that did not intend to persecute deaf or dumb people, but no thought was given to its impact on people who have difficulty with using a telephone.
I do not claim any special attention for being disabled or trans. I want all our services to be suitable for everyone who needs them, as public services should be.
So if my essay here means anything, it should mean that someone somewhere will review their case files, go the extra mile, be open to change, face the individuals they deal with and see them and respond to them as individuals.
Eleanor Levy June 2015