When I think of the quote “I wouldn’t change my child for the world, but I will change the world for my child” I think of Lisa Bridle. Rather than just coming to terms with a Down syndrome diagnosis and accepting a life on the fringes for her child with a disability, Lisa has fought for inclusion in its true sense and worked towards supporting her son to achieve the big and rich life he deserves. Now she helps other families do the same. Lisa is a woman I greatly admire and I am honoured that she is able to share the knowledge and wisdom she has gained over the past 21 years with us here. Thank you Lisa. ~ Annie x
My beautiful, amazing son turns 21 in a few short months.
This impending milestone has me thinking I really must put my mind to booking a venue worthy of such an auspicious celebration. It has also had me recalling those scary early hours and days when Down syndrome seemed like such ‘bad news’. Over the years, I have often pondered all the things I would like to tell that sad and terrified young (well younger!) mother that I was back then, to comfort and reassure her, as well as help her navigate what was to come. How I would like to be able to reach out to her to break the spell of gloom and confusion and convince her that not only will she be completely besotted by this unexpected baby but she will also greatly value the rich adventure she is about to live – and all she will learn through it.
The first thing I would tell my younger self is: “Don’t worry – you won’t wake up every day thinking “Oh, my God, my baby has Down syndrome”! You will be surprised by how quickly Down syndrome won’t panic you. Talk of Down syndrome won’t clutch at your heart (well, not the way you think!)”.
I would definitely want to tell her that the bleak days of the neonatal ICU will not define her relationship with Sean. And this baby clinging to life will one day grow to be a healthy and robust young man.
I would also say to her:
You need to always see the Sean in Sean – his beauty, his essence, his joy and mischief and spirit. Keep up a protective shield from all those who only see diagnosis and deficit and not this beauty, worth and perfection. Enjoy this baby. The days and years will rush by. Don’t let your worries about milestones and ‘keeping up’ rob you of these precious baby years. Slow is okay. Sean is absolutely okay, just as he is.
However, I would also have to tell her:
You have quite a bit of work ahead of you! There will be lots of appointments – they suck – and some other tricky medical bits and pieces, but the harder work will be actually undoing all the unconscious disability prejudices you are only beginning to realise you have.
In a really short time, you are going to get a crash course in recognising all the stupid ideas about disability that infect the thinking of most people in our culture (without us even realising). You will have to face up to the fact that you are not as cool with diversity as you thought and that instead you have been schooled in ideas that people with disability are burdens, objects of pity, inferior or lesser. These ideas will drive you to want to ‘fix’ Sean. You will quickly reject these ideas intellectually, only to find them still spilling over to your unconscious mind, planting seeds and doubts and undermining your confidence in Sean and his future.
I would tell my younger self that THIS – undoing the impact of societal prejudice – in her (and in others) will be the most important work of the early years. The rest – early intervention, toileting, feeding and more – will feel really important but until she gets crystal clear about the impact of old ideas on what is possible, she risks selling her son short, and that these prejudices (even in herself) can be far more damaging and limiting than any extra chromosome.
You will frequently underestimate the strength and persistence of those old harmful ideas in yourself – and in others. And even when YOU have done the work to consciously reject this societal conditioning, you will need to face the painful reality that society has not changed as much as you had hoped.
Sorry, but I can’t sugar-coat this – Sean is always going to be more vulnerable to rejection and a form of ‘special treatment’ based on limiting assumptions and stereotypes. Decades after the Disability Discrimination Act and years after the UN Convention on Rights of Persons with Disability, equal access to life opportunities is not guaranteed. Disability prejudice is alive and well. The good news is that there are many great people with open hearts who will also love and appreciate Sean. Welcome and not rejection will mostly be the norm, but, painfully, heartbreakingly, Sean will also know rejection and exclusion – and you will need to learn to see this for what it is and have the courage to fight it.
Oh, I need to tell you that the systems you will face are becoming really sophisticated so it is sometimes harder to recognise when we are being sold a dud. There is so much slick marketing and feel good websites that you may not always immediately recognise the same old institutional thinking in what is on offer. Those putting barriers in Sean’s way will be ‘nice’, they will tell you that they are only concerned about what is ‘best’, their tone will be measured and polite. Everything will be called ‘inclusive’ but unless children with disability and children without disability are equally welcome (and in the same proportions as in the general population), you are probably being served up a perversion of inclusion. Learn to probe and to question. Educate yourself. Read the UN Convention and inclusion policies. Surround yourself with people who will help you to remember what is ordinary and typical. Be choosy.
You will need to grow a thicker skin … to go where people with disability are not immediately welcomed and to persevere, rather than retreating into what seems safe and non-threatening. Insist on a BIG life, a life of adventure, a life at the centre – even if this means many uncomfortable conversations with the system’s gatekeepers who think they have the power to direct Sean’s life.
Despite this ever-present threat of exclusion, as Somerset Maugham has said, “It’s a funny thing about life; if you refuse to accept anything but the best, you very often get it”. You will find out that the vast majority of options reserved only for people with disability are not good enough. Be clear about the life Sean deserves and your own authority to insist on the best.
It will be a really good investment of your time to learn how to be a skilled and effective advocate. Advocacy training will help you to be unambiguously on Sean’s side, while also building partnerships, thinking strategically about who and how to influence, and being prepared to confront authority. You will need to be wise in picking your battles. Learn from those who have been doing this a lot longer – they will be your mentors. They will help you distinguish the difference between ‘fight mode’ and effective advocacy and to know what it is worth fighting for.
You will get some good advice quite early … “Do what you were planning to do” and “Start where you want to end up”. These two ideas will hold you in good stead. They will be the antidote to retreating into a world of ‘special’ that takes you off into some parallel path. It will help you remember that the ordinary choices are not ‘second rate’ and that the ordinary ways – park time, snuggling up with Dr Seuss, singing silly songs, your local play group – should not be squeezed out by therapy or whatever new fad gets served up for children with disability. Cling to the ordinary!
Believe me when I tell you there are no ‘special needs’ – only ordinary needs that are harder to get. Knowing this will help you to deal with those who will profess to have expertise you need. Be wary about those who seem to define Sean’s life choices by what has been rather than what is possible for people with disability. Listen to those who focus on potential rather than limits, those who really see Sean rather than offering up a ‘menu’ for people with Down syndrome. Keep well away from those suffering from low expectations, and make sure you also don’t underestimate Sean. Remain optimistic.
You are stronger and more courageous than you know.
Eleanor Roosevelt has said: “We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face… we must do that which we think we cannot.”
Live this. Yes, right now, you are full of fear and doubt and dreaded imaginings based on outdated stereotypes, but your dreams for Sean are still there. Reclaim those dreams! Use them as your compass. They will help you to steer your own course. Being the mother of a child with disability will shatter many of your illusions of life being controllable in the way you previously fantasised, but you will also learn the value of consciously choosing the sort of life you want and where you want to invest to make Sean’s life as wonderful as possible.
You might have heard it said, “The grass is greener where you water it”. Rather than bemoaning what isn’t, this will help you to work out what you can do to make Sean’s life great. If you want Sean to have friends, invest in friends. If you want Sean to have a job, help him learn skills. If you want Sean to have be known, appreciated, loved and connected, make sure he has every opportunity for this. Keep him included from his earliest days – in childcare or kindy, in school, in sport, in clubs, with neighbours, with family friends. Invest in community. Keep watering and tending where you want the grass to grow!
There is safety in numbers. Find your tribe – those friends and allies both within and outside the disability community. You will absolutely benefit from knowing families who walk a similar road, but don’t let your family be swamped by this ‘special’ world. Instead, keep up your other friendships and don’t forget that everyone counts in a family – we all contribute and we all need to take. You are not a ‘carer’, you are Sean’s mother. Don’t let this be your only identity. You deserve more than this, Sean does too.
One day, many years from now, you will look around and your beautiful baby will have become a young man. He will be handsome and strong. He will be hilariously funny, infectiously social, generous, affectionate and loving. He will be full of dreams for himself. He will work for great pay in a job that he loves; he will have a wide circle of friends and people who love and care about him; he will be active and industrious, a learner, a valued volunteer, a much loved neighbour and a world-traveller. And you will look back with puzzled amazement at why you were once so afraid, so short-sighted and so lacking in imagination not to see in that small baby all the love, all the delight, all the joy, all the pride, all the friendship, and all the wondrous adventures ahead.
With thanks to my wonderful friends, Glenys, Mandy, and Anna for their suggestions for this piece and with gratitude to the many other people with disability, families and allies who have been my teachers.
Lisa lives in Brisbane with her husband and three children. Since the birth of her son, Sean, almost 21 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.
Last year, Lisa wrote a guest post here called ‘The Virtue of Stubborn‘.