Ms Carol Brill:

A dhaoine uaisle, I thank members for inviting me to speak today about the urgency of recognising deafblindness as a unique disability.

For a moment, I would like members to experience what it is like to have dual sensory loss. Please imagine that there is a power cut in this room. All the lights go out. The microphones do not work. The Acting Chairman would call a recess to this meeting until power resumed. Members sit here in darkness and silence. They are unable to see people's facial expressions or movements and they struggle to hear what others in the room are saying. Now, please imagine being at a hospital appointment in this dark and silent world. That is the reality for people with dual sensory loss.

When I look at my colleague, Ms English, beside me, I can only see her eye. I cannot even see my hand. Without the support of my stenographer, I rely on lip-reading and my hearing aids. My sight and hearing are deteriorating because of Usher syndrome, a rare genetic disease that, after old age, is the most common cause of combined deafness and blindness. There is no treatment or cure. I have little hope of seeing my daughter's first communion next year. I have been told that hearing aids will be no use to me within the next ten years. This is what I am facing as an unemployed single parent to my seven year old daughter, Sara.

Since the age of four years, I have worn hearing aids. Recently, I received extremely high-tech hearing aids that allowed me to hear this world properly for the first time in all of my life. These hearing aids allow me to feel safer as I go out in Dublin when I need to be aware of the dangers, such as the quiet Luas and electric cars that I may not see coming near me. Sadly, they are unavailable to me on the medical card scheme because the hearing aids available through it fall far short of my audiological needs.

I struggled to find an audiologist who fully understood my needs as a person with dual sensory loss. Now in my 40s, I have luckily found an audiologist in the commercial sector. I know that not all people who are deafblind have this experience or can afford it.

At the age of 11 years, my parents were told by an eye specialist that I was going blind and that it would be best to send me to the boarding school for blind girls. Thankfully, they did not listen and were determined that I continue in mainstream schooling.

Throughout my teenage years I struggled with my sight and hearing, unaware of my diagnosis. When I was 21, I found out my diagnosis, that I would go blind due to retinitis pigmentosa. Unfortunately, despite all of the consultations and investigations by various medical professionals throughout my younger years, no link was ever made between my hearing loss and sight loss and no one ever mentioned Usher syndrome.

I persisted with my own research and during a visit to America I met a researcher who was able to tell me that most likely I had Usher syndrome type 2. Only this month, at the age of 45, I have been genetically diagnosed with Usher syndrome type 2a. This genetic diagnosis was only possible through the relationships I have forged with many of the international researchers working in the field. I could not avail of the services of the National Centre for Medical Genetics because it did not have the resources to undertake genetic testing of my disease.

All through my life, I have attended the eye specialist about my sight and an audiologist about my hearing. I do not have a professional monitoring the progression of my Usher syndrome. I have no one to help to predict and plan for the ongoing deterioration and the adjustments I need to make to continue as an active, contributing citizen and, above all, a mother. The Disability Act 2005 entitles children born after 2002 to have their health and education needs assessed and receive a statement on the services available to them. I remain excluded by this Act. There are no statutory guidelines in place for people like me. The life cycle approach advocated for in the policy Towards 2016 has been absent from my experience. As a working age adult who would love nothing more than to work, I am invisible.

My mantra in life is, "Do not focus on the problem, find the solution." I have researched audio equipment in order that I can continue to communicate with people via text and e-mail when my sight goes completely. I have explored the options of cane training, guide dog assistance, braille and sign language. All of the planning needed to meet my communication and mobility needs has come from my own initiative. It has not been easy using my own initiative. When faced with the prospect of losing my vision and hearing, sometimes it is easier to stay curled up in a duvet and avoid facing the world. I am lucky; I have my daughter to keep me strong, but not all deafblind people are as lucky as I am. The truth is that, despite all of my research, I am no clearer about whether I will be able to access basic health and social care services. I honestly do not know how I will make my way in this world for the rest of my life. In a place that proclaims to cherish all citizens equally, I feel invisible. There is no dedicated entry on the national physical and sensory disability database where my needs should be recorded. There is not a single case worker putting my needs and those of other dual sensory impaired people at the top of their priorities.

I see two possible trajectories for my life. My future is that the degeneration of my condition will make it difficult for me to be the great parent I want to be to my daughter. Already, finding employment is extremely difficult and I worry about becoming a prisoner in my own home for the rest of my life. I do not want my daughter to witness this. The other possible future is that, with the necessary supports, I will continue to parent effectively, continue to learn, grow and develop as a person and contribute my learning, knowledge and experience to others and society. I have a passionate belief in my own responsibility to do all that I can to make that second, brighter future possible, but I also recognise that our elected legislators play a vital role in shaping the world in which we live, move, hear and see. They have it in their gift to improve the health and social structures over which we often stumble. Those of us with deafblindness are not invisible. I ask committee members in earnest to positively consider our request to have deafblindness recognised as a unique disability. Please open the doors that will allow us to live and fully participate in this beautiful world alongside them. I am most grateful for their time and attention.