Parker: The Boy Who Taught Me About Shame

There are very few things about which I feel shame. Shame: “a painful feeling of humiliation or distress caused by the consciousness of wrong and foolish behavior”. Note this: the consciousness of wrong or foolish behavior.

However, we are often made to feel shame over the silliest things. Some people are made to feel ashamed because their clothes are “so last season”, or they are unable to have a certain amount of income. Many of us who read and write for Open Ears have had at least one experience with shame over hearing loss. But where is the “wrong and foolish behavior” in having ears that do not function as we believe they should? This ill-placed experience of shame causes us to forget what is truly wrong and foolish behavior, which we should justly feel ashamed of.

Sad boy alone in a bare room

How do I know what it’s like to carry a wrong idea of shame? At age 16, I learned what shame really was by becoming a bully.

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Making Health and Social Care Information Accessible

The NHS in the UK recently launched a consultation into the proposed ‘Accessible Information Standard’ which recommends measures to meet patients’ communication needs, including the provision of Speech to Text. While I welcome these improvements — and boy, do we need them — it does beg a question as to why this is felt necessary in addition to the Equality Act 2010. As Laura Ringham wrote, way back in 2012:

There is a clear legal foundation for providing access to healthcare services for people with hearing loss. The Equality Act 2010 requires service providers to make reasonable adjustments to make their service accessible for people who are disabled, and states that they must anticipate and promote these adjustments rather than make them on a responsive basis.

Ringham L, 2012, Access All Areas? A report into the experiences of people with hearing loss when accessing healthcare, Action on Hearing Loss

So, why is it that the Health Service is so behind in terms of making reasonable adjustments so that patients can understand what is being said to them during examinations and consultations? And, where are the legal challenges to the shoddy status quo?

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I’m Not Going on Vacation

I don’t know if this is peculiar to where I live but here professionals tend to have a habit of talking about people’s experiences of hearing loss as a ‘journey’.

Hearing Loss Luggage

According to the Oxford dictionaries, a journey is ‘an act of travelling from one place to another’. To me, a ‘journey’ involves setting out with the aim of reaching a destination. But that does not fit with my experience of deafness. I didn’t choose a destination or route and I certainly didn’t buy a ticket.

If life’s a ‘journey’, then the destination is the coffin, is it not? In this metaphor, having hearing loss is not the journey itself — rather it’s a heavy and somewhat cumbersome piece of luggage which some of us have to carry around. Sometimes, there may be a luggage trolley (hearing aid or other device) to make things easier and on occasion, someone might carry the luggage for us (watching something with the subtitles), meaning someone else has done the hard work for us, but, for the majority of us with hearing loss, we’ll be ‘carrying it’ with us for life.

And that’s fine. Everyone has something, don’t they? High blood pressure or a bad back. But do their doctors refer to those people’s conditions as ‘blood pressure marathon’ or a ‘bad back ramble’?

In the same way the media likes the phrase ‘battle with cancer’, so health professionals like a ‘hearing loss journey’.

Perhaps the ‘hearing loss journey’ phrase came about because of professionals studying the Kübler-Ross ‘five stages of grief’ which is also referred to as a ‘journey’, but is that enough for the phrase ‘hearing loss journey’ to have caught on?

Or is it something to do with the whole ‘pathway of care’ way of thinking and speaking about patients? Pathways, journeys… us deafies are clearly going somewhere. Perhaps at some point the professionals will let us know where they think we’re heading: that way, we’ll know what to pack!

So, this is a plea to the professionals out there: becoming deafened isn’t a journey with a destination. We haven’t bought a ticket, so please don’t talk about ‘journeys’: we’re adjusting to living with a disability, not going on vacation.