The Virtue of Stubborn {guest post}

It wasn’t until our family and Lisa’s family were both featured in the qweekend article called ‘The Chosen Ones’ that I realised we had a few mutual friends. Soon after, I read a fabulous article by Lisa in our local Down syndrome magazine and knew that I needed to meet her in person, and she was as awesome in the flesh as she was on paper. I am so thankful for parents like Lisa who have pioneered for us, who have asked the tough questions and continued to strive for inclusion for all our children. Thank you for sharing your story of stubbornness in this space today, Lisa. ~ Annie x

People say that individuals with Down syndrome are stubborn. They also say they are ‘placid’ so (surprise?) they may just have their own unique personalities! But my son, Sean, most definitely fits the stereotype – though we insist on calling it determination. It is also pretty clear that Sean’s stubbornness is genetically inherited from his hopelessly stubborn parents. From the onset, his Dad and I have been determined that his life will not be defined by his disability.  We have stubbornly resisted the low expectations and special path reserved for people with disability.  We have been unwavering and obstinate that Sean would get a life as ordinary as possible, be recognised for his gifts not his challenges and that, if necessary, we would fight for his inclusion in the mainstream of community life. Equally Sean has persistently demonstrated his determination to be at the centre not the margins – and to make a place for himself in the world, even in places where he is not immediately welcomed.

Sean has always been delightfully charming, sociable, funny and spirited. We fell utterly under his spell.  Instinctively, we wanted ‘the best’ for him and our yardstick was that he deserved the same life opportunities as his bigger sister, Milly.  It was daunting to realise, however, that getting an ordinary life is made harder by histories of prejudice, institutionalisation and inferior treatment.  We knew we needed more than just ‘wishful thinking’ for Sean to be included.  We would need to consciously choose at every step for Sean to be in the real world rather than in a parallel disability world.  And we were stubborn enough to believe that not only was this his right, but that we would be doing others a favour by his presence.

Inclusion is, of course, not just about ‘rights’. It is about being known and belonging in a local community so it was obvious to us that needed to be included — in childcare, kindy, pre-school and then school.  Mostly entry was easy, but along the way we needed to challenge the ‘one hour a week’ enrolment in preschool and that same year we resisted the kindly pressure by guidance officers to enrol in a special school many suburbs away.

This first test of our courage and commitment to the inclusive path made us realise that Sean’s inclusion was not guaranteed but very much conditional.   Knowing though that separating children with disability was an historical habit (rather than being genuinely in Sean’s best interests) helped us feel stronger in our advocacy; we chose a school without a special ed unit and insisted that Sean be really included (not just placed) in the classroom, by being challenged to learn and included in all the regular co-curricular activities of school.  During these primary years, we were also determined that Sean’s life would look like any other child of his age – playdates, birthday parties and sleepovers, circus classes, soccer,  tae kwon do, swimming club and all the ordinary activities of childhood.

While Sean’s primary years were not a perfect replica of our vision for him, the school community was overwhelmingly welcoming. He was loved and embraced by students, parents, and staff.  He participated fully in the life of the school – camps, concerts, sports days, assemblies– and the enthusiasm with which he was always approached within and outside school was testament to how much he was valued and belonged.

We invited other children to our home and regularly hosted parties even if sometimes we feared that Sean’s offer of friendship would be rebuffed. It also took courage sometimes to turn up for the ‘sign on days’ not sure whether he would face rejection – but EVERY TIME it was worth the knot in my stomach.  How grateful I am that the plethora of ‘special classes’ did not exist then as I fear they become the default.

Sean left primary school with real enduring friendships– friends that he still sees regularly for parties, lunch, movies, and more. He phones them and chats on Facebook – and a number live within blocks of our home making maintaining those friendships much easier.

The high school transition was not easy and Sean’s enrolment was rejected at the school of our choice, but we were delighted when he moved to a new school in walking distance from our home half way through Great 8. It was a massive jump from the small primary school to an all boys’ College of 1400 students.  The first months were fantastic but testing times arrived somewhat predictably during the traditional ‘horror year’ of Year 9. Sean struggled socially and tried to desperately engage – not always in ways that endeared him to staff or students.

In Years 9 and into Year 10, our commitment to genuine inclusion was greatly tested. We were called to a series of school meetings where it was patiently explained to us that our chosen school was not right for Sean, and so they would provide a list of appropriate schools – “protective environments” – which would better suit his needs. It felt like we were judged hopelessly unrealistic parents who were choosing to disadvantage our son and burden the school through our commitment to inclusive education.  We also experienced (however unintended) a painful dismissal of our view of Sean as a precious, wonderful boy with the same life aspirations, the same need to belong, and the same capacity to contribute to and benefit from the ordinary rituals of high school.  It was a heartbreaking time but strangely I was also completely at peace with our choice.  Despite Sean’s struggles, he strode into that school with a stubborn confidence, and I had great faith in him and his capacity to weather the storm of adolescence.   It also helped that I saw Sean as already belonging, not needing to prove himself as worthy of inclusion or acceptance.  While disappointed, I understood that this was a steep learning curve for the school. I stayed committed to having a positive relationship with the school and accepted the reality that, after centuries of exclusion, the inclusive path is not always easy – but always worth taking.

There were many highlights of Sean’s high school years. He had wonderful teachers and loved Art, PE, Drama, SOSE and his Maths, English, Religion and Science classes.  He loved school camps, he proudly displayed his art and photography at the Art show, he participated in the rugby program, the cycling team, and loved to support the weekend school sport and enjoyed many other school rituals and events.  He could not have been prouder to wear the Senior white shirt at the beginning of year 12.  At the beginning of Year 12, Sean also turned 18 and when I saw him on that night surrounded by more than 50 friends – from both primary and high school – I was reinforced in my confidence in our choices.  Sean’s complete joy was palpable, particularly when insisting on gathering the boys of his school to sing the school song.  He took his great friend, Harriet, to the Senior formal and post-formal party. His Graduation ceremony was incredibly moving – as he confidently walked across the stage in his Senior shirt, tie and blazer, Terry and I were so very proud.  We were prouder still when we saw him walk amongst his classmates shaking their hands, patting them on the back and congratulating them.  He was absolutely ‘working the room’!  He was an enthusiastic participant in the whole school warcries which signalled the Senior’s farewell, attended the graduation party and then he was off to Schoolies.  He left school with a strong sense of himself, a pride in his school and loyalty to his tribe!  He has great mates with whom he shares great history.

Sean is revelling in life after school. He works three mornings a week as a valued member of the operations team in a large NGO and the job could not be a better fit for him – it is an incredibly social and creative environment and he is adored by his workmates.  He goes off proudly with his swipe card and ID and is enjoying all the social perks of work, as well as feeling a sense of purpose and contribution. As well as work, Sean’s week includes a literacy course, church youth group, gym, swimming, ju-jitsu, hip-hop, cooking, supporting rugby, catching up with friends, learning new skills, pursuing interests such as photography and cycling, volunteering at a food co-op, and heading to the pub. He tells us he is moving out of home and going to uni!  (see: https://www.aacl.org/inclusive-education/post-secondary-education/) He is unmoveable on both these points, and we are determined to make this happen for him.

Sean’s life is not, however, despite our best efforts, identical to his sister’s. He needs us more; his social life is not as spontaneous as hers.  But we will not give up on Sean’s right to a regular 19 year old life. He has been a regular at a popular inner-city hotel on a Wednesday night, as well as hitting the nightclubs. Dropping him off to line up to show the bouncer his ID along with his mates and hundreds of other young people feels so ordinary – and, even with our back up plans, a little terrifying!

But despite the terror, I say being stubborn is highly under-rated! Sean will remain in the ‘real’ world.  He would accept nothing less.  He deserves a life comparable to other young people without disability – not just a pretty good life for a person with disability.

We have a choice about which side of history we want to be on. Trying to build inclusive communities, while separating children on the basis of impairment, is untenable – illogical, unnecessary, damaging and out of step with the fundamental obligations of the UN Convention on the Rights of Persons with Disability. As parents we need to play our part in resisting the harmful habits of the past. I don’t for one minute underestimate the challenge of this, and nor do I judge parents for their choices in the face of complex circumstances and exclusionary systems, but I would encourage parents of children with Down syndrome to stand strong in their dreams.  It is never too early or too late to choose a more included life.  I would also encourage parents to support each other in these struggles so together we can stubbornly insist on the right of our children to REALLY belong rather than being pushed to the margins. We need to stubbornly focus not on ‘special needs’ but on what our children have to offer and equally we need to trust in the capacity of the community to offer friendship and welcome.  Inclusion won’t be perfect or without challenges.  We are, after all, still at the start of a social transformation, but Sean’s life in its rich ordinariness, tells me that an included life is both possible – and absolutely worth it!

Lisa lives in Brisbane with her husband and three children. Since the birth of her son, Sean, 19 years ago, she has been active in disability advocacy and completed a PhD on the ethics of prenatal diagnosis.  Lisa works for Community Resource Unit (CRU) in Leadership Development for families who seek an inclusive life for their family member with disability.