Compass Institute | Profile Magazine
Having a disability, doesn’t mean you can’t squeeze the best out of life – just ask 27-year-old Sarah Fitzpatrick, who is a shining example that all you need is to find your bearings. Enter Compass Institute, the local charity empowering young people to live the life they’re not only capable of, but one they deserve.
“Life’s problems are put into perspective when you see their smiles, the joy they have, gratitude and appreciation of the small things life brings, being present and being okay with being in that moment.
“Spending too much time rethinking the past makes people sad and too much time trying to predict or control the future makes them anxious, so the idea of being in the now is actually something we can all learn – there are some aspects of living with a disability we can actually learn from as individuals, families, groups and communities, if we are open to looking at those things.”
Having spent quite a bit of time with Sarah Fitzpatrick and her family throughout the writing of this very special feature, I couldn’t agree more with those sentiments of Compass Institute founder and CEO David Dangerfield.
You see, Sarah unequivocally stole my heart.
Born and bred in Sydney, Sarah moved to the Sunshine Coast with her dad, John, and mum, Libby, in 2003, where she attended Currimundi Special School for six years. Not knowing what post-school providers were available, they were staring down the barrel of Libby needing to give up work to become a full time carer.
Their saving grace was the Compass Institute, an award-winning Sunshine Coast charity providing support for people with intellectual and/or physical disabilities. David Dangerfield founded Compass in 1992 to provide alternative education programs to at-risk youth through local schools and in 2003, opened a post-secondary service aimed at changing the philosophy behind this type of service from one of passive recreation to a pathway of lifelong learning, skills-based training and vocational opportunities.
“We didn’t know what to expect and with some trepidation we went and I know that I became quite relaxed with what Sarah was exposed to and what they were doing at Compass and it's been absolutely fabulous,” says John.
“I admire what David and his staff do because as a parent you know how hard it is and we’re looking after our own child, they’re teachers looking after all of the other children.”
Since joining Compass in 2010, Sarah has continued to learn the basics of personal grooming, cookery, numeracy and literacy, as well as workplace health and safety, civic rights and responsibilities, and personal safety.
Sarah also has a creative flair and thrives in the arts through pottery, tie dye and woodwork. She also practices aikido, a form of martial arts, and gives me a demonstration, flexing her arms to the side and exclaiming, ‘Don’t mess with me’.
“Originally Sarah would talk like this (bowing her head), she wouldn’t look people in the eye, she would mumble, was very quietly spoken and it’s a credit to Compass that they’ve got her to speak more clearly and have eye contact,” says Libby, prompting Sarah to hold her gaze with mine and we both share a laugh.
“Even something as simple as going to the deli and ordering a couple of slices of Devon, having to speak to that person and having them understand what they were asking for. She’s grown in her confidence to speak to people that she will now look at people and you can understand her and understand what she’s saying.”
As Rose Rimmer, from Caloundra Compass says, they create an expectation and understanding that if Sarah acts like an adult then she’ll be treated like an adult; it becomes about respect.
“I have two daughters in their 20s and I’d want my daughters to be treated with respect and Sarah has the right to that as well,” she says.
For the past five years, Sarah has also worked at Pelican Waters Bowls Club, where she picked up food preparation and waitressing skills.
“She started with basic kitchen handling skills and making salads and one day they saw her taking plates that were left at a table back to the kitchen and they realised she can do that. Then over a period of 12 months, she had to learn how to carry someone's dinner to the table without sticking her thumb in their mashed potato, just little things like that,” says Libby.
“It’s taken four years to get to that point, it’s all those little increments you need to achieve.”
As Compass CEO, David says there are hundreds of microsteps behind every task we do, regardless of how trivial or small it may seem. Think about making a cup of tea; which has over 15 steps to complete such a simple task.
“It’s about pointing out what we take for granted in any process we have unconscious competence in and also the language we use. For example you might say you put the jug on, you put the jug on what? Did you put water in it? Of course I put water in. Did you turn it on at the wall? Of course I turned it on at the wall. There is no of course,” he says.
“In the back end of all of those things are hundreds of microsteps and they have to be plotted for someone with an intellectual disability, not taken for granted and then they have to be trained and repeated until that person also has an unconscious competence in that skill.
“There is an enormous amount of paperwork, planning and dedication from the staff, so that Sarah can be unconsciously competent in doing those things. What worries me is this assumption it just happens, it doesn’t just happen, it takes thought, planning, repetition and process.”
John and Libby concur, saying Sarah started early intervention in Sydney at six weeks of age to learn to crawl.
“From six weeks to seven months she was learning to crawl and everything is repetitive, repetitive, repetitive and you get very sick of it but you keep persevering and eventually they get it and it becomes a normal, natural thing for them to do; be it crawling or making a cup of tea, it’s just that every little step takes this much longer for them,” says Libby.
As John explains, it is a collaborative effort, with their family and Compass staff working together to help Sarah thrive. Her two older sisters, Lauren, now aged 32 and Kaitlyn, 30, played a huge role in her early development, as all Sarah wanted to do was keep up with them.
“We, as parents, and Sarah, as a person, have a role to play. Sarah doesn’t have any special favours from us, where we live now, Sarah is fortunate to have her own bedroom with her own ensuite, so that’s her responsibility to keep that clean, Sarah has to make her bed every morning, change her sheets on the nominated day, set the table, help with the cooking; it’s not like we sit back, but it was a process for us. All of the time since she’s been at Compass she’s never wanted help making the bed,” says John.
While it’s a life John and Libby never preconceived when going into the birth suite to deliver their third child, they wouldn’t have it any other way.
“It all started when she was born, the obstetrician goes, ‘I think Sarah has down syndrome, I’ll get the paediatrician’, who said, ‘Yes, Sarah has down syndrome, what that means I don’t know; I can’t tell you what she can’t or can do, same as I can’t tell you what the other two can or can't do,” says John.
“He suggested the early intervention clinic and that was the start of the long road for us and a longer road for Sarah, but now we get to this point and it has all been worth it.”
David says prior to the 1960s, there was an assumption that being born with an intellectual or physical disability was a medical issue, and therefore a welfare mentality was adopted, branding these young people as a liability.
“What if that was wrong? What if the person wasn’t a liability, what if they were an asset? The next question is, ‘What unlocks assets?’ and the answer is education. You’re always learning, right from the time you’re a young child, at the hands of your parents, they’re teaching you and your family is helping you grow,” he says.
“People with an intellectual disability or disability get that through to Year 12, then this welfare mentality kicks back in really hard. But there’s a developmental delay, peak learning is 18 to 25 for a person in that boat, you need to continue to unlock the asset post-secondary school, when they’re in that peak learning period, and that exactly coincides with when the government stops funding their education.
“That’s exactly why Compass exists, we let them become their own hero, let them become their own asset and continue to help them reach their peak, the same as you or I did, which was through further education and training, that’s what's missing in this sector, in this country.”
Of the stigma surrounding people with a disability, both David and John believe the barriers are being broken down, but more often than not it is being instigated by the person with the disability, rather than the general public.
“You have to be deliberate about it, you can’t assume that just being in the community is enough. If you have half a dozen ‘Sarahs’ taken to the movies by Rose, that’s not going to create acceptance, but you have Sarah managing her money, going up and asking for her ticket, knowing how to behave socially in that environment and going over and getting something from the cafe, lining up like everyone else and communicating with the person behind them in the line, that’s what breeds acceptance and natural behaviour, it’s unnatural to have them herded around like a group of three year olds,” says David.
Within Compass, they have Connections Cafe in Nambour, Wabi Sabi homewares and gift shop in Palmwoods, and the Compass Farm at Hunchy, where they run Rakes and Pains, and the Harvest Kitchen.
All operations contribute some of their costs back, but David says none are commercially functioning because their primary purpose is to give a supportive workplace environment to a person with a disability.
To cover the logistical operations and staff, Compass also holds fundraisers and events, applies for grants and accepts donations from generous locals who believe in the power of Compass.
“You can have four or five young people per staff member, because their capacity is at that level, but if you have a young person who is non-verbal, non-mobile and requires personal care, we have some people who are palliative, they require the best possible care we can give them in a stimulating environment and they need one or two staff with them to support them and look after their needs,” says David.
“Having a disability is not a line in the sand, it’s a spectrum and there are people from highly medicalised disabilities right through to people like Sarah, who have no limits to what they can achieve.”
When Sarah was diagnosed with Down Syndrome, doctors checked her heart, lungs and organs and she was given a clean bill of health, which Libby says she is fortunate to have. It wasn’t until she was three years old, that her hair started falling out and was diagnosed with alopecia, which has had no health implications.
“We have met with children along the way who have a medical condition that has meant they’ve had to spend time in hospital and haven't been able to access services, so their development hasn’t been as strong,” she says.
“Sarah is fortunate she’s healthy and it’s made such a difference to the quality of her life and what she can do.”
Sarah has absolutely pushed the limits too, when she was in high school, she swam at the Special Olympics and represented Queensland in basketball.
“The unsung heroes in all of this are the mums and dads, they can choose to back out of it and adopt the disempowering relationship with their child and John and Libby haven't done that, they’ve put in the hundreds of thousands of hours in a developmental relationship with Sarah, not just a nurturing relationship and that’s different and it’s difficult,” says David.
Wearing a cobalt blue lace dress, Sarah stands on the set of our April cover shoot, staring down the barrel of the camera with photographer Giselle Peters from Duke and Gypsy on the other side.
“Now, close your eyes and think of the person you love most in the world,” says Giselle, “Who is it?”
“Me!” Sarah unabashedly exclaims, throwing her arms in the air and letting out a laugh.
While Sarah has overcome countless obstacles in her life, this is one lesson we can all learn from her, and it’s a message of self-love; pure and simple.
Originally published in Profile Magazine
Photo: Duke and Gypsy