Niamh Hayes was born with hearing loss and was diagnosed with diabetes at the age of 17. This is her story, as told to Fiona Tyrrell
I WAS BORN with hearing loss and I have never known anything else. In a way, it was my parents who experienced my deafness more vividly than I did during my early years.
For me as a youngster, my hearing difficulties involved the odd trip to a person who would play strange noises at me. It only registered when I was older.
I know at the time my parents felt quite unsupported. My mother described how doctors told them I was deaf and then just walked away. My parents had to do all the research about it themselves.
They decided against sending me to a deaf school, and so I attended a mainstream school here in Dublin. It was only in that context that I noticed any difference.
My experience in school was varied. Kids are kids, and they can be great and awful. The same was true of my teachers.
One of the biggest issues for me was sitting my Leaving Certificate. I did not want to do aural test in Irish and French, but the Department of Education would not give me an exemption - it seems that they listened to the advice of a visiting teacher over my own teachers.
I have what is termed moderate sensorineural hearing loss. Depending on the situation, I wear one, two or no hearing aid. I wear none at a disco or where I don't need amplification. If I am at a conference where I am away from the speaker, I will wear two.
In a way, my hearing is not a health issue, as such, but it does affect me in other areas of my life. My experience is that it can be quite lonely for people with hearing disabilities. Medical teams do not automatically refer you to support services. There is also no advice or guidelines given in advance of big landmarks in life, such as attending school or going to college.
There are many fantastic voluntary groups out there, but you do have to go out and find them yourself.
I attended a speech and language therapist from the age of two until I was 10. I left school at 2pm and went to the therapist. It was a part of my life and I accepted it as normal. Speech and language therapy has really stood to me. Although, everyone comments on my accent, which sounds English - my speech and language therapist was English.
Then, at the age of 17, I was diagnosed with type-1 diabetes. This was a completely different experience of the health service.
To start with, I was hugely relieved when I was diagnosed because I had been feeling so bad.
I inject insulin every time I eat and test my bloods myself. I try not to let it affect my life. With diabetes you have to be so aware of small things - what you eat, meetings running over, making sure you have all your gear with you at all times. Like any intensive drug regime, the daily programme takes a lot of energy.
When I was diagnosed with diabetes, I found the lack of overlap between different services quite frustrating. I had to explain my medical history every time to the different teams of specialists I encountered.
The care I received from the diabetes team was fantastic, but, like other areas in the health system, the service was overstretched. They do the best they can.
My disabilities do not define me. They are just part of who I am. My parents believed in me and taught me to believe in myself. It is not something they ever verbalised, but they never doubted for a minute that I could do what I wanted to do in life.
I have always led a normal life: I came home at 3am; I fought with my dad; I did a BA in UCD and went on to do a masters in equality studies. In college, I was involved in the students' union.
Now I am co-ordinator of Dead Ahead, a forum for graduates with disabilities that endeavours to identify and tackle issues around employment. My job is to pull together information on benefits, grants, legislation, health and safety and career advice.
Things are changing for people with disabilities in Ireland. More and more people with disabilities are attending college. There has been a big change in beliefs, attitudes and expectations in Ireland.
A big problem, however, is instability. Many of the great supports and programmes in the disability sector do not have permanent funding, so there is no guarantee they will be there in a year's time.
There needs to be a much more holistic and joined-up approach to supporting people with disabilities. This is to ensure people do not spend all their time trying to access information and to give them the chance to function like everyone else.
It does not need to be as complicated as it is.
SUPPORT GROUPS:
• Ahead, the association for higher education access and disability, tel: 01-716 4396
• The Irish Society for Deaf, tel: 01-860 1878
• Irish Diabetes Federation, tel: 01-836 5182
• Readers who would like to talk about their own health experience, good or bad, can contact this column at healthsupplement@irish-times.ie