Jun 20 , 2020
My name is Pattie and this is Tricia’s story.
I am sharing my story because I love my daughter. If sharing my story evokes change for the better and moves us closer to a more inclusive, just society, then I have done her justice.
From Doubts to Dreams
Tricia was born in October 1967, the fourth child and sibling to three other daughters. The labor was over 24 hours long and the baby was in distress, far too big to be born naturally and was finally delivered via a C Section. During this long labor, Tricia was trying to force her way out, but the large size of her head meant she would progress, press against the umbilical cord, subsequently cutting off precious oxygen supply and then retreat only to try again and again.
The restriction of oxygen resulted in Tricia being born with hydrocephalus, and significant brain damage.
The prognosis was that she would not survive.
I woke up to a distraught husband who had been left alone to digest the news that the doctors had told him. He then had to deliver that information to me. That our baby was badly brain damaged, was probably blind, would never speak and would be a ‘vegetable’ but would probably die anyway. This was delivered with the understanding that this would be for the best.
When Tricia survived past the first five days, the advice was to place her in an institution, forget about her and think of her siblings and my marriage which would probably not survive this instance.
This was my first introduction to other people's perceptions of how we should view and treat people with a disability in our communities.
From the very first day, services to assist people with a disability and families of people with a disability have relied on various government assistance programs.
People with a disability have a variety of needs and the programs created to address this remains in a dynamic state of transition due to the very complex nature of disabilities.
These programs and the language to describe people with a disability have morphed and changed over the years as has the data and studies which they are based on. From institutionalization to isolation to community living there is no one fit, just is there is no one person with the same needs to live their best life!
What happened then?
I tried to enroll my daughter into school when she was 5. Government regulations stated that Tricia should be in a 'subnormal' school.
I took her to school every few days to allow her to watch the children playing and I fought to have her attend school like all her siblings - as a basic right of the society she was a part of. Tricia attended an 'opportunity' school until she was of high school age. After that she went to a ‘special’ school which was out of her community however she continued to survive and thrive.
After school finished, any opportunities to study further, like those afforded to her siblings were nonexistent. At 16, Tricia finished her formal schooling.
She went on to attend a variety of sheltered workshop programs working for less than minimum wage.
Tricia has attended a great many programs run by a variety of organisations as she has progressed in age and changing interests.
Government funding to support people with disabilities is provided for their care and support however there are still instances of distribution of individual client funding being shared among other clients in group settings. This and non delivery of programs or staffing is a common occurrence with the expectation that families will have to step in where needed – and we often did adding extra stresses to her siblings and us - as her aging parents.
As a parent of a person with complex disabilities, this can feel very disempowering. I have always strongly believed that her sisters should be just that – her sisters, not her carers.
There is funding to support people like Tricia but I know that people with disabilities need good advocates around them – family, friends, great coordinators, carers, and support groups.
What is happening now?
Tricia lived at home in the care of her family and in her community before moving into independent living at age 42.
She now lives in her own unit. She has been approved for a funding package which is used to provide a case manager, paid carers and external community support people. She attends various services, goes to the gym, shops locally and utilizes other community services with this support. The family self manages Tricia’s funding package with the support of an amazing group of carers, her family and other advocates for people with disabilities.
I want to share my hopes for the future for my daughter, especially when I am not here any longer.
I hope that there is always someone ensuring that the support services are transparent in their practices and accountable for the government funding that they have been entrusted with through adequate review and reporting systems.
I hope for a community that supports the care workers, so they in turn can support people with disabilities with respect and genuine care.
I hope that the funding assessment processes are more humane and that feedback or recommendations for people with a disability are considered by the ones that know them the best – their families and their advocates. I hope that this information is taken to heart and really considered.
I hope people with disabilities are not treated as lesser members of the community due to circumstances outside their control.
I hope people with disabilities are treated as a member of a varied, multicultural and supportive community.I hope for a community where a person with a disability can live their best life.