Never too late to get a life

In this presentation, you’ll hear from Josey McMahon, an independent consultant, advocate and board member who provides advocacy and capacity building to people with disability and their families.

Josey shares the story of her twin sister Cathy, who is now an artist, friend, aunt and active member of her local community on the Gold Coast. Cathy’s life today is rich with relationships, creativity, familiar places and valued roles, but this was not always the case.

Josey reflects on Cathy’s many years living in an institution, and the deliberate steps taken to support her into a different future. She explores what it means to safeguard the life of a person with disability, not only by preventing harm, but by building vision, relationships, valued roles, community connection and the right support.

Meet Cathy and Josey

Cathy McMahon is an artist, a friend and an aunt, an active and valued member of her local community on the Gold Coast. Josey McMahon is Cathy’s twin sister. She is an independent consultant and a board member of various organisations, providing advocacy and capacity-building for people with disability and their families.

Transcription

Please note that the transcript provided may contain occasional errors.

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So I’ve entitled my talk “Never Too Late to Get a Life”.

Good morning to all present. Firstly, I want to acknowledge the Ngunnawal people as the traditional owners of the land on which we meet today and pay my respects to their Elders, past and present.

I extend that respect to Aboriginal and Torres Strait Islander people here today.

I would like to express how humble I feel to have been asked to share Cathy’s and my story at Imagine Moore’s conference.

I will share a little of our story. However, woven into our story will be the theme of how important it is to safeguard the lives of our family members with disability. We are all vulnerable to the mishaps of life. However, our family members have heightened vulnerabilities that we need to intentionally have safeguards in place to prevent bad things from happening to them.

Cathy and I are twin sisters. We have three sisters and four brothers. We live on the Gold Coast. Cathy lives with two housemates at Labrador and is often seen out and about in her local community. She is known at the Grand Hotel where she dines and attends karaoke. She would be missed at church on Sundays, cornerstones on Wednesday and senior citizens on Friday if she wasn’t in attendance.

Cathy enjoys her pampering sessions on Saturday and has become known for her art and her beautiful cards.

I live with my husband Rob. We have six adult children and nine grandchildren. I have been a strong advocate for vulnerable people with disability for the majority of my working life. I have a business called Life Steps Australia through which I provide social work, advocacy and support coordination. I spend my working life having conversations with people with disability and their families about what it takes to build good lives for themselves.

I’m an active member of my church community and am currently the chairperson of Crew. Overall, Cathy now has a good life, but that wasn’t always the case. Cathy’s life would be very different if I hadn’t intentionally put things in place to ensure that she has a good life. Although she has a team of good workers, I do not leave it up to them to create Cathy’s life.

I am continually thinking about what things could go wrong and what else is needed to safeguard Cathy and her good life.

Google says safeguards is a measure taken to protect someone or something, or to prevent an undesirable event from happening to the person or thing that is needed to be protected. Some of the common (inaudible) of safeguards are: defend, guard, protect and shield.

While all these words mean to keep secure from danger or against attack, safeguards implies taking precautionary protective measures against possible danger.

It is what we need to do to prevent harm from our family members.

Let’s go back in time to when we were born, and you will see how Cathy’s life took a very different path to mine.

Cathy and I were born in 1955, in a country hospital in southwest Queensland, 14 weeks premature. Mum was not expecting twins, being Catholic and not expected to live, we were baptised immediately. A humidicrib was rushed by police escort from Toowoomba to Miles. Both of these actions can be considered safeguards. By being christened, my parents believed that if we were to pass on as babies, we would go to heaven.

The humidicrib was to support temperature regulation, fluid and electrolyte management, and skin integrity. We remained in hospital for 2 or 3 months before being allowed to go home. We had very poor prognosis, so low expectations were upon us from day one. As time went on, Mum observed that we were not reaching milestones. She raised this several times with the various medical staff, who brushed her off as being an overly concerned mother.

Over time, it was discovered that I had a visual impairment. However, I did not know that I was legally blind until I was about to embark on university studies in my late 30s. I often wondered how people knew things around our neighborhood, which I hadn’t – how at movies, people seem to know who the actors were, and I didn’t.

For so many years, my world did not make sense and I developed a very low self-esteem. Cathy was diagnosed with cerebral palsy and a severe intellectual disability because Cathy couldn’t speak. People treated her as if she was invisible. Cathy is an artist, and when I have shown some people who aren’t, I have observed that the opinion of Cathy suddenly changes.

I attended the local primary school. However, Cathy was not afforded the same opportunity. I was given many opportunities throughout life that Cathy was not afforded. I got to make my first Holy Communion and confirmation – important milestones in the life of a Catholic family. I got to remain living with my family, where Cathy, at the age of 11, was placed in an institution.

I was able to work, marry, have a family and become a grandparent. My parents were advised by the medical professions that it would be best interest of Cathy and the family for her to be placed in an institution. Sadly, this advice was taken.

This was devastating for the family. However, my parents believed that they had no option.

At the time, they thought it best. This was an extremely difficult decision to take.

Cathy’s life stagnated behind the walls of an outdated health facility, where she stayed for 47 years of her life. I attended a one teacher primary school. I failed every exam until grade six, when the teacher took extra time to coach me during lunchtime, and then my marks went up to 80%.

This still did not change the image that I had developed of myself.

My high school years were challenging. I was to attend a school for the blind in Brisbane. However, I managed to convince my parents to send me to the private school that my sisters attended.

Before every exam, I would pray: “Lord, I may not deserve to pass, but give me a miracle,” and I would pass the exams and get my miracle.

The principal, teachers and my parents were surprised that I had passed grade 12. My faith in my God is also a safeguard for me. My faith gives me strength and confidence. My faith has always been a safety net when people haven’t believed what I am capable of.

On reflection, despite finding my primary school years being challenging, I would rather go to a mainstream school where there was low expectations rather than a special school where there were no expectations of me at all.

Having some expectation of myself to complete grade 12 was another way that I felt I could safeguard my future of having employment that was fulfilling. Over the many years, I have worked in a variety of positions within government, state and federal, and community based organisations, my work life has also had its challenges due to my visual impairment, not having access to the right support in my workplace, and the very low expectations that managers had put on me.

At one workplace, when I handed in my resignation to participate in further studies, the senior social worker told me that she thought college was beyond me. During placement at college, I would get great reports. However, the comment would be you shouldn’t be doing social work or community work as you cannot see and you cannot drive. There was never any discussion about how I could be supported to do my job.

I’ve encountered on many occasions discrimination are not being provided access to appropriate support, even with disability organisations whose mission it was to either support people with disability or to be a voice for them. The work that Imagine More does around employment is such important work, as they want the young people to succeed within the work environment and are intentional about what safeguards need to be put in place.

I am now successful in my work due to the establishment of building my own business. The establishment of my own business was a safeguard to ensure that I had an opportunity to work. I could put the necessary safeguards in place for my own success. These have included things such as right technology, my own workspace, maintaining a flexible work schedule, and having the right people around me.

In 1990, I enrolled at James Cook University to study a degree in social work. I remember being in class when the lecturer was speaking about the institutionalisation and how government wanted to close institutions. I lent over to the student beside me and said to her, they can’t close institutions. They can’t. I’ve a sister living in one. This was really where the story began of a different life for Cathy, although it took another 24 years for her to move from Baillie Henderson into the community.

At university, I became a potent advocate for the rights of students with disability. I was asked to join the student union to be a voice for students with disability, was on the Library Advisory Committee, and was a student representative at an inaugural conference for students with disability.

All of this whilst I was grappling with the idea of the institution closing and what Cathy’s life could look like.

I was fortunate in having fabulous supervisors for my student placements. One of these people was a parent of two children with disability. The other person was an older woman with a vision impairment. They understood me and they proved to be great mentors.

My university different days were so different to my earlier experiences at school and work. I was supported, encouraged to complete an honours degree. I graduated with social work in 1994 with honours.

What was Cathy doing?

Whilst I continued on with life, studying, working, marrying, having a family, Cathy’s life had become stagnant as she lingered at Baillie. Her life was wasted away while she was poorly positioned in her princess chair, which was placed in front of a TV screen mounted high on the wall.

As time passed on, many of Cathy’s relatives moved away and those remaining found hospital visits difficult.

The environment at Baillie wasn’t conducive to family visits. The place had a definite stale smell that institutions appear to have, and one that permeates and lingers. The smell was a mixture of urine, body odour, medicines, disinfectant and overcooked food. The hospital was old and it had a worn and shabby look about it.

There was nowhere pleasant or private for family to gather. The noise of the hospital wards were overwhelming. As well as the usual humdrum of a hospital ward, there was the continual sound of upset and unsettled patients – crying, moaning, screaming, etc.

It was a hard place to visit. Yet, that is where Cathy remained.

After graduating from university, I was invited on to the board of a local advocacy agency. The board consisted of people with various disabilities. Some of those peoples had lived in institutions and had experienced abuse, neglect and exploitation. It was very difficult to listen to their stories, knowing that Cathy was incarcerated in an institution where people were congregated, segregated and excluded from mainstream society.

Once I was conscious to the abuse, neglect and exploitation of people, it was even more difficult to visit Cathy at Baillie. I wavered between letting staff know that I was coming so that I gave them time to ensure that Cathy was dressed appropriately for family visits, o r just turning up knowing I was more likely to witness the neglect towards Cathy and her co-residents by the health care workers.

Cathy may have had food and shelter, however none of her other needs were being met. Her health had deteriorated. She was on a concoction of drugs. Her teeth were rotten. She had a bad odour due to continually having reflux and regurgitation stomach acids. It was not considered nor appropriate for Cathy and other residents to access dental care, and the public dental system refused to visit the ward where Cathy lived.

Hence, Cathy lost all of her teeth not long before coming out of Baillie Henderson in 2014 to sheer neglect.

She was denied the opportunity to live a fulfilling and meaningful life until ten years ago,

On one such visit in 1994, I did not recognise her. Cathy was sitting by herself, had her head down, rocking back and forth, and looked so sad and forlorn.

There appeared to be little life in her and this was not the sister I usually knew, who is so exuberant and excited when she saw me.

This was a wake-up call, and I needed to do something.

In 1996, I moved from Townsville to the Gold Coast to be closer to Cathy. I began working as an advocate on behalf of vulnerable people with disability.

I was emotionally challenged as I advocated for better lives for people with disability, whilst at the same time Cathy’s life language as she remained at Baillie. Around this time, there was an inquiry into the abuse and neglect of people with disability living at Baillie. To my horror, Cathy was residing in one of those wards being investigated. I have no doubt that she experienced abuse and neglect.

I had to do something.

I had witnessed the transformation of people with disability, leaving institutional care, embracing the opportunity of living in the community with individual tailored supports.

Listening to the positive stories of people living in the community was a catalyst for me to begin to have a dream for Cathy and have a better life for her.

Over the years, I had listened to many inspiring stories. However, I often questioned whether it was possible for Cathy.

It took me a long time to believe that it was achievable, but I knew I needed to involve others. I found it hard to ask people to be involved initially, as I would make up excuses like: the people I wanted to ask are busy helping others.

So this prevented me from taking the necessary steps or asking other people to help me. I wasted so much time on the negative, rather than focusing on what a positive future could look like for Cathy.

Finally, I got the message. If I wanted a different life for Cathy, I had to be the one to drive it. I had to believe that it was possible and take action.

In 2007, my sister Carmel and I attended two workshops called Vision to Action. Through planning with the support of the consultant, we developed a vision statement.

Cathy will be living in her own home close by family.

Cathy will have reciprocal relationships with family and friends.

Cathy will have enhanced communication in order that she can indicate her choices.

Cathy will be part of her local community.

Cathy will have meaningful activities to do.

Cathy will have a team of people around her, paid an unpaid, to support her and to keep her safe.

Once we decided that Cathy needed to move from Baillie, we were aware that it would take a long time before she would be living in her own home close to family.

Given this, it was necessary to put safeguards in place to protect her from further harm and neglect while she remained residing at Baillie. We started to think about what we could do to improve Cathy’s life.

We looked at various life domains and chose the domains that we felt had a positive impact on her life. These life domains were: health, relationship, spirituality, and safety.

For health, I made myself known to Cathy’s doctor who was responsible for her for her board. We built a relationship of respect. After some time, either of us would contact each other if we have any concerns around her health. She had encouraged me in what I was trying to do for Cathy. This was a stark difference when compared to former interactions with medical staff.

For safety, I contacted the Queensland Public Advocate and the Queensland Advocacy Agency, a systems advocacy group who had begun systems advocacy efforts around Baillie. I had developed good relationships with both these agencies, and I would report to them any concerns I had after my visits.

For spirituality, I was able to contact the local parish to find out when church services were on. I’d arranged for one of the volunteers who visited Cathy’s ward to take her to church services. This strategy was also about building a relationship with the volunteer who knew Cathy, and who could report back to me any concerns that she may have had.

For relationships, we developed a roster for the family members to visit. While the roster idea didn’t take off, we looked at other ways for Cathy to connect with family.

Family gatherings were instigated in Toowoomba each Christmas, which Cathy attended. Engaged to support worker to take Cathy on outings into the community. I didn’t get this right immediately as I realised the support worker and I were not on the same page. It was clear that I needed to find a match for Cathy and myself.

Not long after, another worker was engaged to be connected with Cathy, who responded to our needs.

Around this time, I had a phone call from our eldest brother, who had not seen Cathy for many years, to report that he had seen Cathy at Myers. This reinforced for me the importance of people with disability having opportunities to be in the community rather than behind closed doors. We then organised for Cathy to be supported to visit her brother.

For the next couple of years, we celebrated our birthday at his home. A relationship between Cathy and our brother was reignited. Cathy paid for her own support as she did not have any government funding. What I was doing for Cathy influenced Baillie staff to to think about something more and to do something similar for other residents. The Friends of Baillie applied for government funding for community access.

The funding application was successful. This ignited excitement with staff and residents, as it meant other residents could have access to and go into the community. I could have thought that this was enough for Cathy. However, I knew that she deserved a lot more. I heard about the concept of circles of support, which was reinforced at one of the planning for the future workshops.

Circle of support interested me, as I knew that bringing my dream into reality for Cathy wasn’t going to happen without the support of others to assist me in my thinking of what was needed.

Although I wanted to have a circle of support around Cathy. We recognised that I needed to have a circle around me. I questioned who would be interested in joining me.

I identified possible people and someone did the asking and the circle was developed.

We had our first meeting in 2008 at my home. It consisted of family members and friends who believed that Cathy deserved a better life.

Circle members needed to have a genuine interest in Cathy. It was important to be clear about the purpose of the circle of support.

Initially, it was to have conversations about what consisted of a good life for Cathy and how this could be achieved. I learned very quickly that I needed to value the circle members themselves, value them, their contributions, their time when together, as all of us were very busy people. I felt that I had to be accountable to the circle members.

Although it was difficult at times to be kept on track, it was a good thing as it forced me to do the things that I probably would prefer not to have done. At times it would have been easier to just not follow through some actions. This accountability drove me to complete the small steps of actions and to prevent me from procrastinating.

Not all members agreed on some actions. But, overall, through discussion and discernment, we would come to a common understanding. At times, the circle invited others in when there was an issue that we needed further wisdom on. The circle of support continued to meet for several years. Sometimes it was monthly. Other times it might be quarterly. And then there was a period of time that we didn’t meet for several months.

There were times when I had individual conversations rather than bringing the whole circle together. The circle continued to be involved in some capacity up until we achieved our goal of Cathy moving from Baillie, and for several years after, it was really important to develop and have a clear understanding of the vision we wanted for Cathy. When we were approached with various options of places where Cathy would live, we knew what we did not want.

This proved to be a very important safeguard, as Cathy could have been moved into a group home arrangement with 4 or 5 or 6 or 7 other people, some distance from where I lived. At times I was tempted to compromise my vision and move Cathy into any group home just to get her out of Baillie. I thought that this may be a stepping stone towards achieving the real vision.

However, it was the circle who continually reminded me not to compromise my vision. Although it was 16 years ago since we developed the vision statement for Cathy, it hasn’t really changed, nor has it been fully achieved. However, it is something that I continue to work towards. I worked with a disability service provider and a social housing company to develop a submission for Innovative Housing.

We centred it around the impoverished life that Cathy was living at the time, and compared it to the life that she could have if she was living in the community. The funding body liked the proposal and funded it. These two organisations were involved, as I believed that housing and support needed to be kept separate. It was important for me to ensure that Cathy was not living in a house owned by a disability support provider, as it could have been very easy for them to evict her so that they did not have to deal with me as Cathy’s advocate.

Thanks to the Wasted Lives campaign of Queensland Advocacy Incorporated, Disability Services had engaged crew to begin planning better lives for people with intellectual disability. Crew had engaged Michael Kendrick, who is well known for his thoughtful and expert knowledge, to aid with this work. The day we started was the day of the Toowoomba and Brisbane floods, and this project was suspended, then reduced.

As Cathy’s name had reached a ministerial level, she was one of three people from Baillie who DSQ decided planning work could continue. In May 2014, Cathy moved from Baillie into her purpose built house at Labrador, a new short distance from where I lived.

I’d like to tell you that this was the beginning of a new, purposeful life. This was not quite the case. Neither Cathy, nor her family, had a choice of who she was going to live with.

The service and disability services chose two other people. I worked hard to try and create a home that would reflect Cathy. However, the only room that could reflect her was her bedroom. It had been designed in a way to include a sitting room, as it was envisaged that Cathy may not always have the same opportunity as others to get out into the community.

Little did people know.

Within a short period of time, I had 18 complaints about the service that never got resolved. I had felt so disillusioned after all I had dreamed, envisioned, and planned for Cathy. Eventually, I had the opportunity to engage our own independent workers to support Cathy, who now works 7 a.m. to 9 p.m. to better meet her needs.

At night, Cathy, supported by a service provider in a 1 to 3 ratio. At times we have considered moving Cathy from this home. However, we love the position of her home and it is now where Cathy has become part of her local community.

Cathy has a more enriched life as I’m able to influence the independent workers, where it was difficult to have any influence over the workers employed by the service.

Having positive roles and a positive image has been important to change the image of how others view Cathy. Since Cathy moved into the community, she has achieved so much and has valued roles that have enhanced her image of who she is. She is now a sister aunt, she’s a tenant and she’s a great aunt. She’s a tenant. She’s a neighbour. She’s a church member. She’s a consumer at the various shops and local cafes. She’s a member of the local senior citizens. She’s a business owner. She’s a good friend and companion, and she’s a valued community member.

We have come to realise that Cathy herself likes to be well presented in her dress and appearance. We have engaged an artist to support Cathy to build her card business called Cathy’s Creation.

Both Cathy and I are tenacious and resilient. I had to embrace these attributes to go out on my own and achieve my vision. Although Cathy and I are from a large family, I had to make these decisions alone as our family had concerns of moving Cathy into the community.

They really had to see it to believe it.

Although we had many years and it has been a difficult journey, it has been well worth it, as Cathy has taken up the challenge and embraced her new life.

We are eternally grateful for the time that we now have together. I believe that this would not have been possible without listening to the stories of encouragement, imagining better, developing a vision, getting started, intentionally planning, speaking up, keeping focused, owning the process, taking the authority, reaching out to others, and bringing others in with myself on the journey.

Remaining strong through difficulties, thinking deeply, analysis and having a framework, believing that the dream was possible, developing safeguards, thinking outside the box and persevering.

Cathy’s sign on her wheelchair says it all. God has a plan for my life. It is so far behind. I will never die.

Thank you.