Living with…Deafblindness

Callum June 1, 2015 1
Living with…Deafblindness

45-year-old Hayley Reed explains why she ‘doesn’t do pity’…

I’ve been deaf since I was 10 in my left ear. It used to only affect me in loud places, but these days it’s affecting me more and more in my everyday life. I was told by doctors that it was just a lazy ear and that I’d get over it, but it’s only in the last eight or nine years that it’s been properly diagnosed.

I’m diabetic, and started to get cataracts. When my eyes were operated on it came to light that I also had glaucoma and detached retinas. I’ve now got some vision in my right eye and have had my left eye removed. After being involved in a road traffic accident I’m also a wheelchair user – I severely damaged my knee, which unfortunately gives way on me now a lot of the time when I stand up. I have diabetic ulcers on the same leg that won’t heal, and it’s because of those ulcers that I’ll soon be having the leg amputated.

Lending a hand
I live by myself in my own bungalow, and have carers who come in three times a day – at morning, tea time and supper time – to help with my personal care, cleaning and meal preparations. In the last few years the support I receive has come via direct payments, due to the policy of the borough council where I live in Lancashire; there are only two other visually impaired people in the county besides myself who are on them.

PX Hayley Reed Photo 2Being on direct payments you’ve got to interview somebody, pay them, do accounts – you become an employer. I’m lucky in that I’ve got a good male PA, but I need to use an agency for my personal care. Direct payments can be difficult, and are definitely not for everybody. If I could, I’d go back to the system I was on before because it was simpler. You might have had fewer choices, but at least you knew your needs were going to be provided for, no matter what.

I can get to the local village shops on my own, but any further afield than that and I struggle. Most of the shopkeepers know me, so all I have to do is knock on the window – if I can’t get in, they’ll come out and serve me. I have very good friends who come round and check I’m all right, help me with shopping, take me on days out and lend a hand however they can.

Unfortunately, though, over the years you can also attract people who just want to rip you off. I’ve seen people bullied by so-called ‘friends’ taking money off them and never paying it back. It’s important for people to be aware that some of those they think as friends actually aren’t.

Getting on with things
Because my left eye is shut – the same side as my hearing loss – I can look very vacant while people are talking to me. That said, there are times when people will try and talk to me through my PA or carers, asking them rather than me what I want. We were recently at our local eye hospital; while we were buying tea, the lady serving us gave the change from the money I’d given her to my PA and promptly put my cup into a plastic beaker with a lid on. I insisted that I didn’t need that type of cup, but she ignored me. I might be disabled, but it’s my legs that don’t work, not my hands. But it happens in various subtle ways.

I use a white cane with red deafblind markings, but people don’t always realise that those markings actually mean something, which causes problems when people walk in front of me at speed. I’ve known older deafblind people who actually don’t use deafblind canes, because their families are concerned that they’ll draw attention to the fact that they’ve got an added disability, make them more vulnerable and therefore more likely to get attacked.

There are times when I like to try and do things out and about on my own, without a friend or PA to help me, as that’s how I am – but there are occasions when I’ve been called ‘stupid’ by strangers and told that I shouldn’t be allowed out on my own. You can go months without it happening, but when it does it makes you feel so vulnerable. Just one thoughtless person can ruin a shopping trip.

Other times, people in shopping centres and hospitals can treat you with pity which winds me up. I don’t do pity – I never have. I just want to get on with things, because that’s how I was brought up.

PX Sense logo - purple and orange on white - JPEGFurther information
Sense is a national charity that works with children, young people, adults and older people who are deafblind or have single-sensory impairments with additional needs. The organisation’s services include respite and flexible support packages and supported living services, alongside various educational and leisure opportunities.

For more details, contact 0300 330 9250 or visit www.sense.org.uk

One Comment »

  1. Tracey Graham June 3, 2015 at 4:17 pm - Reply

    Very brave and inspiring young lady

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