Tuesday, 15 October 2013


So it's October - how did that happen??

And it seems that October is International Down Syndrome Awareness Month. How fascinating. There are only 12 months in a year and Down syndrome gets one of them. (Along with about a dozen other things to be aware of, but it sounds pretty impressive!)

So this is interesting. Largely, for me, it is interesting because Down syndrome is something which people actually need to become aware of. For many years ladies have been checking their boobs for lumps and gentlemen have been fronting up to the doctor and presenting their rears for digital examination. In contrast, Down syndrome has changed. The early intervention and therapies available are showing that all over the planet there are extraordinary people emerging like butterflies from a chrysalis.

So I'm quite pleased that planetary awareness is being pointed at Down syndrome - even though I don't use that term any more!! Does anyone know who is in charge of nominating awareness months worldwide? Is there a schedule up on some planetary tea-room wall with different months set aside for different purposes? Is the rightful owner of the month drawn out of a hat? When calendars are printing up the next edition, who do they ring to find out whose month is whose? If you know, feel free to leave a comment in the comments!

And so how do I want to spend my October most effectively? We all know that I set very little store by the Down syndrome paradigm or by the expectations still held by many in the field of allied health in terms of what can be achieved by a child and then an adult who has "Down syndrome".  I don't like to use that term actually, because it just doesn't really relate to Jacinta at all. When I look at her I see a child who is just as bright as my other two. Her mobility is slightly delayed but if you take into account that she didn't get to start working on that really until she was about 5 months old, I think she's entitled to special consideration.

Her language and manual dexterity are about average for her age. She's doing really well. There are a couple of tiny things in her facial expressions that my other two didn't do and her nose is still flatter than that of my other daughter who was also born with almond-shaped eyes. People certainly don't look at her and ask what's wrong. Either everyone in the world is really good at poker or they don't see anything amiss. There's nothing different about the vibe in conversation from my first interactions with my eldest and now. So I don't think that the Down syndrome descriptions are helpful in terms of things to expect and make people aware of. If it's a list of things to treat and look out for to resolve, then fine.

I think that awareness needs to lie in two areas. The first area is that of early intervention and expectations. It is becoming increasingly obvious that when you treat people like intelligent and able people they have the chance to reach for that standard but when you treat them as disabled simpletons they will only reach that far - unless they have a great deal of mettle and are able to disagree wholly on their own and make that difference on their own steam. This is happening, slowly.

Things such as "Michelle and David", a movie about a couple who get married and have to fight for their independent life; the court case where a young woman with Trisomy 21 is appointing other legal guardians because she doesn't want to go to the group home where her parents want her to be; Karen Gaffney being awarded an honorary PhD; Tim the restaurateur who serves breakfast, lunch and hugs; the man in Ireland (I think) who has earned an official figurehead title through his fundraising efforts, the young woman who made the video "Don't Limit Me"; and the list goes on, are all trailblazers who add weight to the idea that it is completely unknown what the limits are for someone who has Trisomy 21. In fact, when people with Trisomy 21 are getting married, having children, earning tertiary qualifications, starting businesses or holding down steady jobs, doesn't that make their limits as nonexistent as those of the person who lives next door who could also do any or none of these things?

The second area that I think needs to be addressed is that of respect. This is something that people with Trisomy 21 are striving for but in asking for it their advocates often fall short of the mark. I hear often about 'acceptance' and 'inclusion'.  If I arrived in a group and needed to make a life in that group, I could be accepted. If they were feeling kindly and not wanting to hurt my feelings then I'd be included. This puts me at the mercy of their kindness and I have no power of my own. If I do something that people think highly of, or I demonstrate that I can do something like that and will if necessary, I will have commanded their respect and be an equal player in life.

There is an 'R' word that people find offensive because it is used to label or derisively describe people who are less intelligent than the average. People with Trisomy 21 have been labelled with this word all too often by association, being by their facial features easily identified with other members of this group.  True, in the past when T21 kids were shut away and treated like idiots (literally) they lived short lives and functioned as idiots. Now that they are nurtured and encouraged to grow, we have no idea what this generation of kids with T21  are going to achieve.

I think that in the future the T21 kids will command a lot of respect since people will look at them and see what they have overcome to be doing what they're doing. I also look around and I see disabled people walking (or not walking) around. Since Jacinta's heart surgery I have a newfound respect for the disabled. When I look at someone in a body which has real problems, we're not talking a bad hair day here, and think about what it takes to get up in the morning and actually leave the house, I deeply respect them. When I think about the disrespectful things that are sometimes said to them or done to them, which they can't easily counter since they are less able to use the body that they are having to use,  I respect them even more for getting out of bed and leaving the house.

We all get up, shower, eat, get dressed and leave. No big deal. These guys haul themselves up, have a very complicated showering process, if they get their own breakfast using crutches or wheelchair bound  or shaking uncontrollably it's not straightforward, getting dressed with out the full use of two arms and legs is tedious and frustrating at times (ask a person with a broken limb or a pregnant lady) and leaving the house is not just a simple case of walking out the door. That's just leaving the house!!! Then they get on with their day, which must drive them half mad sometimes. There are able-bodied people out there who can't face the day when their day has nowhere near the level of difficulty or disrespect that these folk have to experience. My hat is off to the physically 'disabled'.

But I also think this runs deeper. When I think of it, I think of problems which abound worldwide and wonder what would happen if we brought back this old-fashioned concept of respect. There used to be a mantra, "respect your elders", which no-one much says any more. The older I get, the more truth I see in that statement. There is something to be gained by an observant person when he lives a long time in a full life.

The things that really bother me about society are that there is a fundamental lack of respect across the board. The tendency to criticise without having any notion of the reality of what or who is being criticised is prevalent in this society and I see it across Facebook in particular. Everyone's an expert it seems. The concepts of 'haters' or 'disrespecting' are quite new really. There was a time when manners prohibited this sort of behaviour. Then the post-war era happened and rebelliousness became fashionable. This brought a sort of coolness to treating others badly.

Once I had a Facebook friend. He was known through other friends and he was quite young, in his late teens. We got along quite well, until he started hanging out with some different people and his posts started to sound something like, "that awkward moment when you lean out of the car to throw a bottle at a (insert R word here) and he turns to look at you just as you've thrown it.........etc", and at that I unfriended him.
What on earth makes anyone think it's ok to a) do something like this and b) talk about it like it's even remotely funny? What on earth makes anyone think that they are in a position to treat anyone with such disdain? It's exactly the sort of person who would do this who is not in a position to treat anyone with disdain. This sort of person is to be pitied.

If we look around the world, we see religious intolerance. Different religions failing to respect other religions. Non-religious folk failing to respect people who do follow a religion. Religious folk failing to respect those who feel that until a religious philosophy is proven to them they cannot subscribe to any one.

Parents and teenagers fight. Imagine if parents showed their teenagers the respect they would show their favourite movie star if he/she showed up at the door. You'd never scream at and nag Sean Connery or Meryl Streep if they paid a visit. You'd be polite and if they were upset you'd go to great lengths to find out what was bothering them. Imagine if teenagers treated their parents like their favourite movie star. If Kristen Stewart or Robert Pattinson offered to help them tidy their room they'd be in there like a flash. They'd be queuing up to do things for these guys. They'd sweep the floor, take out the garbage, wash the clothes. They'd even do their homework if their idols offered to help them.

How would discipline of children play out if there was respect shown to them, as though we thought their day was actually hard work and they actually achieved something? I am willing to put my hand up and say that there are times when I fail to respect my children and fail to show them respect and my parenting reflects that - and their behaviour, in turn, reflects my parenting.  Sad, but true.

So yes, it seems to me that respect has been shelved for this day and age, but what if we took it out again, shook it off and tried it on for size? We'd all be a lot calmer, for one. Big bosses bawling out the whole staff at a meeting just wouldn't occur. Road rage, gone. Rude comments to strangers, off the agenda. Insults, mistreatment, physical/mental abuse.......the list goes on and is all gone. Manners - in. Courtesy - in. Consultation - in. Listening - in. Kindness - in.

So, it has taken me half of October to finish this post. I was going to suggest that we spend October showing respect to others - disabled, special needs or not, and see where it takes us. Seems we still have  a fortnight or so to give it a try - or we could just keep doing it longer. So my challenge is to look at whoever you see and instead of dismissing those you normally would, have a think and find a reason to respect that person. There will usually be one, at least.

If we all tried that, well, our T21 kids would be well looked after just by being people and we could all just carry on helping them to achieve their own individual goals and dreams.

My next October post will be pointing out a few people who have been living lives I'd be very happy to live, despite having the challenges that T21 throws at them.  Until then, live well!!

What you lookin at? 

No comments:

Post a Comment