How Fragile We Are

Lately I have been reading about "change makers". People who have genuinely achieved something to alleviate a deficit in our world, whether it be access to education, medical care, safe and affordable living conditions or the chance to make it on your own in life. The changemakers have achieved these goals somewhere in the world and it is a very positive and inspiring read.

I have found myself quite shocked by the conditions that preceded these "changes" as of course they were bad enough to motivate the people who set about making a difference. And I have been shocked by my own complacence in accepting that such hard won achievements in establishing equality; can be taken for granted. When I can see that around the world, there are many people to whom the right to be treated as an equal in any circumstance, is a novelty if not a dream.

Of course the people I have most identified with in the story are those that are dealing with disability. Either their own, or their child or someone equally close to them.
That is what motivates a change maker. Faced with the status quo, they find themselves unwilling to accept what everyone else in their society has always assumed is reasonable; and so they set out to buck the system and make change. Change that ultimately benefits everyone.

Sometimes it only takes one person, one person to be prominent in what they are achieving. One person coming from a base of others who all tried to make the difference but failed. One little sister Rosa Parks refusing to stand at the back of the bus; to motivate and inspire everyone else.

So I can take it for granted that as long as my children have the ability to learn, I will make sure they have access to the kind of teaching that gets them where they want to go in life.
Whereas 50, 40, perhaps even 30 years ago; they would have been institutionalised. They would have been taken from me and entrusted to the hands of the Holy Orders or a similar state institutional environment and I would visit them.

Yes, I have to take on a lot of extra responsibility with that right, but lucky for me I am young enough to look forwards happily, healthy enough to cope, and scrappy enough for the fight.

And I just cannot believe that there was ever a time when having a physical disability would disqualify you from attending a state school, let alone getting a secondary or third level education.
But there was and is a distinct disadvantage to having wheels in our universities - even today.
It is mind boggling in an age where Stephen Hawking can write " A Brief History of Time", but the fact is that someone who is born paraplegic in Ireland will have less chance of getting into a degree course, than someone who has an acquired physical disability. Simply because they had better access to early education. Seemingly brains would count for less than mobile legs in our educational institutions. Even today it is only the threat of litigation that is bringing about a change in planning and building regulations that ensures that everyone, can enter and leave independently and safely. Even today, there is a department store near my home town that cannot offer the mobility impaired the chance to try things on; as the changerooms are upstairs. And equal access does not mean using the service lift or worse, being carried up the stairs.

Access is an issue in the world of autism too. Our kids may have the ability to run and climb stairs. But they also have the ability to climb out of windows, over fences, out of seat belts and then across roads, into ponds, or swimming pools.
One of the first things the parent of a child with autism learns is to have eyes in the back of their head. They have to be on constant alert for danger, well beyond the usual toddler stage and every new environment presents multiple hazards.
Our kids have an impulsive instinct that overrides what a typical child could see as potentially risky and a parent has to counteract that; constantly. And they do it with the agility and strength and motor planning of an older child. Add to that their disregard for personal possesions and private boundaries and a visit to a friend or relative's house becomes an exercise in damage limitation and cost control as you try to keep them away from anything you could not afford to replace.

Which brings me to our vulnerability.
In a society that is doing well economically and has the freedom of democracy it is possible to enjoy the benefits of equal opportunity and better awareness of diversity. When people feel they have enough, it is easy to think of sharing and advocating for those who are less fortunate.
But what happens when we feel threatened?

When my son was diagnosed and I was coping with a daughter who was not developing typically either; I felt very much alone. The people who should have stood by me had not and I hadn't yet developed a network of people I could rely on.
I was genuinely on my own and had to call on all my resources to adapt my environment so I could protect and nurture my children.

I remember watching the evening news and seeing the latest wave of refugees arriving off oru northern shores. Packed into tiny wooden boats they were effectively waiting to be rescued by passing ships and then hopefully taken ashore to begin a new life. I am always struck by how awful their lives must have been, for them to risk so much to get to our land. And then, as I watched the mothers desperately passing their children across to the rescue craft; I imagined how I would cope, could I possibly control Boo and Bratty in such crowded, vulnerable and threatening conditions?

The answer was of course I couldn't. And I would have been left behind in whatever hell hole they had come from. Along with the physically and mentally disabled members of their community. There would be no room for a wheel chair or a walking cane in such a life threatening situation. These people had taken huge risks in order to escape to what they hoped would be a better life.
But they could only bring the fittest and strongest with them to do so.

So what would happen to us in a natural disaster or emergency? In Ireland the government have just launched a guide to what to do in a national emergency but I wonder if it takes into account any provision for special needs?
It happens. It happens in supposedly civilised first world countries like the United States where Hurricane Katrina devastated New Orleans. How would I have coped getting my kids up on to the roof when the levies broke? Or into the football stadium to survive for days without provisions or clean facilities? Society seems to break down in these circumstances and people start looting or worse. I am as you know, pretty scrappy, particularly in relation to my kids.
I do not hesitate to play my "autism card" or confront people if I feel I am being judged or discriminated against. And I know how to ask for help. But would there be any compassion and understanding in the crowded and unhygienic conditions of that football stadium, where so many took cover? Could I stop the guy with the 40 inch flat screen on his shoulder to ask him to give me a hand getting Boo and Bratty up on to the wall? Could humanity prevail?

And in these changing economic times when the financial shutters of the Celtic tiger are being pulled down and people feel less confident; will the instinct be to draw in on ourselves and "look after No 1"?

Will there be any room in the lifeboat for us?



Anonymous said…
Gosh Hammie
What a thought-provoking piece of writing! Looking after no. 1 is what we all live by, even if we fool ourselves into thinking we care about others.
Survival of the fittest still seems to be the order of the day and we're supposed to have evolved and moved on from our 4 legged friends. It's not in us human mothers to leave our 'runts' to die, in fact, we fight harder for them and do all in our power to help them keep up, while running the risk of neglecting our other cubs.
The disability world is like a secret members club - so secret in fact that those outside may hear whispers that it exists but unless they are directly affected they do not want to enter this club - they are not even curious. Awareness is the key to opening the door to everyone and showing them there is nothing to be scared of. Raising that awareness now there's the challenge..going back to looking after no. 1 it seems that even within the disability world there lies that motto.. each worthy cause fighting for the publicity, the grants, the services etc. Maybe when one of our precious little ones gets into Dail Eireann things may change.
Nick McGivney said…
I think you've laid it bare. I don't want it to be true, but it is. Society is a fragile construct and it will break down quickly if enough pressure is put on it from any given direction. I do believe that there's a part within most of us that will strive for social betterment, but if the heat is on or the water's rising that part will wait its turn, and it could be a long wait.
That being said, we have come a hell of a long way in even thirty years, and we have both witnessed great change. To paraphrase Kennedy, all it takes for evil to prevail is for good people to do nothing. So each of us has to ask themselves the question: Am I doing something?
Lisamaree said…
Thanks Nick and Sesame. It was one of those midnight put the book down and get writing jobs when it goes from the heart to the keys.
Nick, I love the Kennedy quote, I often refer to it as I can see it in everyday life and particularly in regards to state provisions for special needs.
But now I want someone to disagree. So far in Ireland at least we have succeeded in rallying the general population to support evidence based education for children with autism. To the point where regional politics is affected and the candidates are lobbying for a school in their constituency. That shows that even people who are not affected by autism can be motivated to read papers, listen and text in to news programmes and come out in support of ABA and evidence based education. It is a complicated issue and yet the Great Irish Public seem to understand and support it. That must be a positive?

But yes, I always put my children first and then if I can spread a little of the benefit around I do (but maybe that is because I want the good karma that comes with it??!!)
Awareness and visiblity is the key. We must be out and proud with our differences and challenges; and confront discrimination and limitation head on.
All together now: "We're here, We're unusual, GET USED TO IT!"