Creating a meaningful life for Jackson： Sally Richards at TEDxCanberra

26 years ago , my 3rd son , Jackson West , was born .

I have 4 sons , and he's the 3rd son up there .

They were born within 6 years of each other .

I'm going to describe him to you as he is sometimes described .

Jackson has a profound intellectual disability due to a rare chromosome abnormality .

Cognitively , he is somewhere between 9 months 18 months .

He doesn't speak and he has very little receptive language .

There's very little he can do for himself .

He can't do something as simple as comb his hair or put on a shoe or sock .

He also makes , strange noises .

He dribbles .

He , does a lot of rocking .

He flaps .

He screeches .

He's not a person who is generally welcomed , admired , respected , or championed in our society .

Very different to Hannah , who we saw here earlier today .

Very different to our Paralympians or elite adventurers who might climb Mount Everest or sail solo around the world despite having a physical disability .

So if Farah Jackson were here today , I wondered what he would have on his TED ticket .

I thought he could have , a burden on society or the invisible man or perhaps a hopeless case .

He's been called all of these things and a lot worse .

I call him the invisible man because often , I go out with him and it's as if he isn't there .

People don't look at him .

They don't speak to him .

They don't acknowledge him .

They don't address him .

And I think , oh , Jackson's turned invisible again .

But when I turn around , there he is .

So instead , I thought he could have on his TED ticket , extraordinary person or change maker or teacher .

It all depends how you look at things .

So here are the same people that you saw before .

Only now the only one who looks like he doesn't have a disability is Jackson .

Now Jackson would never normally have any of the good and ordinary things of life .

The things that we all want for ourselves and our other children .

A job , a home of his own , a place in society where he was valued and respected .

Some choice or autonomy .

For all his early years , I didn't see any potential in Jackson for a good life .

Because ever since he was born , I'd been told a single story , and I blindly and ignorantly accepted that single story as truth .

And that single story was this , that Jackson would forever be a passive absorber of time , energy , resources and emotions .

He would be a person who sucked up care and would never give anything back .

He would be a person , I was told , who should be with his own kind .

And people by that mean his own disabled kind , not his own humankind , forgetting that actually he's human first and he is disabled second .

I was told that he could spend his days in a congregated segregated daycare center with other people with similar cognitive limitations where he would have no choice or control over what happened to him each day .

I thought he deserved better than that .

So I have created for him a life of his own , a job of his own , and a home of his own .

Jackson's life is not a life he got by default .

His life is not built around other people's choices and preferences , their staffing limitations , their organisational needs , or their schedules .

His life is his life , and it's built around him .

He works with people who every day speak to him as I'm speaking to you now , who show him every day how to behave in society , who treat him as a val valued human being and respect him for that .

And with me , plan his life around him .

He's doing his Christmas shopping .

Jackson has a job .

He has a permanent part time job in a courier business that I created for and around him .

It's called Jack Mail .

We pick up business mail from post offices and deliver it to businesses .

Jackson's been working in that business every weekday morning from 8:30 until midday .

This is our 6th year of operation .

Jackson is not the invisible man when he is at work .

He is treated with respect for the job he does .

He has a legitimate place in the ACT business community And scores of office workers greet him every day .

He He has support to do his job , of course , because he has support in everything in his life .

People have said to me , well , he's not really working , is he ?

He's got the driver who helps him in and out of the car , helps him deliver the mail .

So that's not really working .

My answer to that is this .

I know politicians with an army of workers to support them .

I know executive directors and directors who have PAs and EAs , and they still can't answer an email that I send them .

But we think it's okay for them to have support to do their jobs while it is okay for Jackson to have support to do his job .

Now the next thing he needed was a home .

In June 2002 , I started the work to get Jackson a home of his own .

He'll be moving in in February 2013 .

Now that is 10 and a half years after I started work .

But , there's 25 houses currently being built , and Jackson's house has already been allocated to him .

Actually , he's the first of my 4 sons to have a home of his own .

So , he will have he will be the head tenant and you might think that is simple but it's very rare for someone with cognitive limitations like Jackson's to be the head tenant and to have control over not only who lives with him but who supports him .

He is not living in a disability group house .

He is living in a house with his own kind , his own human kind .

And the residential community is not a congregated , segregated residential community set aside from mainstream society .

But the thing is that Jackson will be there first .

There will be a couple of other people with a disability living there , but the ratio of disabled to able-bodied people will be more accurately reflective of the broader community .

Because Jackson is there first , people who live there will elect to live there knowing that somebody with a disability is living there first .

I will never again have to listen to someone say to me , we don't want somebody with a disability living here in our suburb next to the childcare center .

Or we don't want somebody with a disability living in our housing cooperative .

We do disability particularly badly in this country .

We are a first world country with a 3rd world disability service .

Out of 27 OECD countries , we come in at number 27 for the way we support our people with a disability and the quality of life they have .

Our disability system turns people like me into beggars .

We call it competitive misery .

The most miserable people might win the funding and support .

But if you win the miserable competition and therefore win the support , it means you're losing at life .

And nobody wants to win that competition .

I certainly didn't want to .

And I could have been a beggar all of Jackson's life and never got him a good life .

His life would have been bleak as would mine because our lives are inextricably combined .

So I I knew that Jackson was an extraordinary person who wanted ordinary things .

And I knew that I was an ordinary person who'd never done anything extraordinary in her life .

But if extraordinary Jackson was to have ordinary things , then ordinary me had to somehow do extraordinary things .

And I had no idea how to do that .

I had no knowledge , skills , or experience .

My only talent's always been as a dancer .

But , you know , I could I knew I could dance as hard and as fast as I could , and that was never gonna get Jackson a good life .

And I also knew that , I you know , I'd been in the competitive misery game for several years , and that is degrading and humiliating humiliating , and it's not productive .

So I knew I had to do something different .

I knew I couldn't be one of the 1,000 all saying , help me .

Help me .

I need support .

So , I didn't know what it was I was gonna do , but I knew that I needed allies and support .

And to get allies and support , I had to do something different .

I had to do something that was not only innovative and creative , but that people could see held the potential of creating good lives for people like Jackson .

And in every case , this has happened .

Jackson's life is created through a family governed project called Getting a Life , called Getting a Life because we all wanna get a life .

Jack Maile is a social venture micro business , and the residential community is , an intentional community .

Everybody I asked said yes .

I went to other families and said , do you wanna join with me and work with me ?

And they said yes .

And I couldn't have done a lot of this without those family support .

I went to organizations and said , will you help me ?

They said yes .

I went to politicians and bureaucrats and said , will you support me ?

And they said , no .

No .

No .

No .

And then they said , yes .

And , then I businesses now come to Jack Maile and say , can you please deliver our mail ?

And I say , sorry .

No .

We're working at full capacity .

Can't do it .

I regularly turn business away now .

Now through all of this , Jackson has been my teacher .

I mean , the things that I have achieved for him , they're not great things in the great scheme of life , but they are great things in Jackson's life .

Now Jackson taught me that we limit lives like his .

You do .

I do .

Society does .

We limit lives like his because of our restricted imaginations of what is possible for him .

We we , we have low expectations of what is a good life for the Jacksons of this world , and it bears no resemblance to what we consider to be a good life for us or our other sons and daughters .

Jackson taught me to work out what are the really important things in life and then to fight for them without reservation .

And I've done that despite people saying to me , you are unrealistic .

You're idealistic .

That is never gonna work , and that is a crazy idea .

He taught me that it is not all about me .

Funny that .

I thought it was for a long time , but it's not all about me .

But it is about Jackson and others like him who cannot create good lives for themselves .

And he taught me that it is all of our responsibility to create good lives for the Jacksons of this world , but not only to create good lives but to give them an entitlement to a good life and stop them being perpetual beggars .

And then finally , I would just say I would never have achieved any of these things without Jackson .

He is indeed extraordinary , a change maker , and a teacher .

And I would say , Jackson , my son , I hope that now for you , I have created a good but ordinary life that is truly worth living .

Thank you very much .