Reposted from the KDRC's website www.kerrydeaf.com. Many thanks for this harrowing and shocking story.This week's update is dedicated to our client and friend Kathleen O'Brien who passed away last week at the tender age of 39. She passed away peacefully after a brave battle with advanced cervical cancer.
Kathleen was Deaf and a sign language user. She had a learning disability, night-blindness, was a member of the traveller community and lived alone for many years. A couple of years ago she was attacked in her home in the middle of the night and had to live in a homeless hostel for many months. She had difficulties with literacy skills and retaining information.
However, this did not stop her from being a very well liked person. She was a regular visitor to our Centre- sometimes coming in for a chat and a cup of tea up to four times a day. She always had a smile, a wink, a nod and thumbs up for everyone she met.
Kathleen required the support of accredited sign language interpreters and Deaf advocacy services. Given her range of disabilities and challenges, you would imagine, it would have been easy for our service to get support for Kathleen? With the introduction of Equality and Disability legislation, supports would be provided with little or no trouble?
The reality was shocking!!! Kathleen attended many appointments with public services and Government bodies without any access being provided to her. When she scribbled down she wanted an interpreter, this request was ignored on many occasions.
When our service became aware of this, we began to lobby on her behalf and came up against obstacle after obstacle particularly within the Health Service Executive. It was difficult to get through to the relevant people within the HSE to arrange, sanction or book an interpreter. We were sent from pillar to post, time and time again.
As it became apparent that Kathleen was becoming unwell, Veronica White from the National Chaplaincy for Deaf People (NCDP), Deaf Advocates and freelance interpreters began to work with Kathleen. On many occasions, these people worked with Kathleen without pay.
The Medical Centre that Kathleen attended started to insist on interpreting access. When these requests were made to the HSE, it was a huge challenge to get sanctioning. We received one e-mail from the HSE asking if it was absolutely necessary for Kathleen to have interpreting access, given she had been attending many appointments on her own for many years.
Government Departments and Public Services are obligated to provide reasonable accommodation to persons with a disability. According to our Barrister, it is clear that the HSE are failing to meet their obligation under The Equal Status Acts and The Disability Acts.
As Kathleen's condition started to deteriorate, she was admitted on a number of times to hospitals in Kerry and Cork. Again, it was a huge struggle to ensure accredited interpreting and advocacy was provided for her. Our service sent e-mails, interpreting leaflets, made phone calls, and typed up a business card stating Kathleen required the services of an interpreter. Staff from our Centre, the NCDP, Cork Deaf Association and freelance interpreters began to lobby on Kathleen's behalf. Requests were ignored many times.
As the process was time consuming and very tiring, we were forced to contact the Ombudsman's Office, The Equality Authority and The Minister for Health. Independent mediation was brought in and thankfully all the necessary supports were put in place immediately.
Unfortunately for Kathleen, this support was too late. It was provided to her in her last few weeks on earth. Why wasn't this support put in place years ago?
If professionals were able to communicate effectively with Kathleen, they would have been more able to assess, diagnosed and treat her earlier. Communication is a central aspect of our daily lives. Our ability to communicate with others dictates our access to vital resources such as healthcare. According to Bagley (1998), communication underlies everything else and is the most important issue for most disabled people.
Is the difficulty of access just a Kerry based issue? Unfortunately not!! Hands On, a TV programme for the Deaf ran two programmes recently on the problems that Deaf people are facing throughout Ireland with the HSE. It's time to stop talking and time to start acting. Kathleen like many other Deaf people are not being afforded equal rights. We need equality of access for all Deaf people before anymore of them die.
In addition to communication support- why was Kathleen not given a smear test? Pre-cancerous changes that occur to cells in the cervix can be detected by means a smear test. This is the 2nd Deaf woman to die of advanced cervical cancer in Kerry in the last three years.
The Government needs to implement a national screening programme for ALL women. Deaf women are not being tested and have died as a result. How many more women need to die!!
In the end, our fight for Kathleen was worth it. Kathleen died with dignity surrounded by family and friends. We would like to thank all those who supported us in our fight for Kathleen.
We would particularly like to Veronica White, Suzanne Carey, Susan O Callaghan, Ray Greene, Willie White, Dearbhla Lenihan (Independent Mediator), the staff of the Clounalour Medical Centre, Arlington Lodge, Dr. Sheahan and all those who cared for Kathleen, Mairead Carey and to the staff of our service. We could not have provided Kathleen with the love, care and compassion she deserved without your hard work and commitment.
We would like to extend our sincere sympathies to Kathleen's family. They accepted us into their lives at a very hard and sad time. It was an honour and a privilege to work with them all. It was clear to see that Kathleen was deeply loved by all of those from the travelling community. Many of her family and friends had learnt a very unique signing system that Kathleen devised and taught them. It showed that she was a very intelligent and loyal person who had great ability to communicate with people.
It's just a shame that many of the professionals who dealt with Kathleen didn't communicate with her in her chosen language- sign language.
Kathleen was a great lady - a true inspiration and a hero. She struggled throughout her life and never lost her smile. Even in her last days, she had a smile, a wink, a nod and thumbs up for people.
We will work hard to ensure her struggle changes the lives of many people for the better. May she rest in peace xxx
