Second part of our chat with Patty and Dave. If you haven't seen the first one
there's a link here that you can click on, that will take you back to the first
part of the interview. I'd suggest you watch that first because it'll make much
more sense if you do. So we're just going to carry on with the conversation where we left off.
So if we then take that on another step. So we've possibly been able to identify a
gift, we think that we might be able to find an environment or a place where
that would be of purpose to people. It's a brave thing to do, to get out there and
do that as a parent or a carer to make that big step and go out and introduce
you and the person that you're keeping your supporting into the world.
How do we do that? It's hard. Yeah, well not being a parent I found it's a lot
easier. So I don't know how much the possibilities are, but a lot of the work
we've done over the years is as a what, what's called I think here sometimes too,
a broker, where we help people make connections. And there's a certain, it's
not that the people I broker for I don't know and care about, but it's different
than, you know, I am an aunt and I'm a grandmother. If someone were to reject
my niece or nephew or my grandkids my heart would be broken, I'd probably be
pissed off, I'd probably get defensive, I probably say things I regret, but if
things happen that are challenging as I'm trying to connect people that I'm
brokering for, or working for, while I care about them very much I'm able to
maintain a certain objectivity. So you know in Joy's situation like, oh darn we
thought the hospital was such a great idea, and Joy's been working so hard and
I'm disappointed about it, but let's think about where we can try next. So one
of the things I would think about is, if there's any way that there's someone
else who can help a parent in doing this.
You know, not that the parent shouldn't be involved with someone who can
actually kind of go out there and do it. Sometimes that's really helpful. Somebody maybe who's
just a step removed, I think who, because we've done that a couple of times with the PA
and I've said, look actually you're probably a bit braver than I am today, can you take
my son just to that first event and just see what it's like. Because it is, it can
be hurtful as a parent if you don't get that reaction and response that you're
you're looking for. That's right, but for us it's, this is the work we do. And we
see this person as someone with great gifts so we're introducing them in the
right way, but we're still able to, we don't have that same kind of hurt that a
parent has. I mean no one has that same kind of hurt that that a parent has.
I think you were mentioning to me before we started filming about some
work that you've been doing around getting PAs actually to go out
beforehand and identify opportunities. Right. We've been over the past eight or
nine or ten months myself and a friend and colleague who's a community
organiser by trade; he doesn't work with folks who have a label of a disability
he just works with communities and his own community in particular. His name is
demon harshest, for people who want to look him up and take a look at his
brilliant work. But we've been working with people's PAs to to think about,
people would get stuck on, there were a couple people we work for who either
had moved or been through some really rough times in life and we're new to a
neighbourhood. And were really having trouble making connections and their
life was getting smaller, they were getting older, they had medical issues,
their life was getting smaller. And we wanted to try and come at it in a
different approach. And the PAs we're getting really stuck. And one of the
things we came up with, was to take the pressure off of the PAs of trying to
find, you know something for, a way for Doug to be connected in this new
neighbourhood. And instead of focusing on Doug we ask the PA to focus on themselves.
To forget all about whether something would have an outcome for Doug, but to go
out in the neighbourhood, and over the next week meet 30 new people in the
neighbourhood, find out who they are by name, find out what they're interested in, find
out what their gifts are. And there doesn't have to be any outcome in and
other than that. Other than just getting to know people. So it took some of the
pressure off of the PAs, but what it also did is it helped them to start to
build their own social capital in a neighbourhood, and we know that we all get
our connections and we get jobs and we get other opportunities by the social
capital we have. So as a PA started to build their social capital they figured
out what people in the neighbourhood cared about, who liked to garden, who like
to drink beer on the porch, who like the Yankees baseball, and they were able to
find areas that Doug connected with those people, and they started to make
those connections. It was an indirect approach for the PAs but it
helped them build their confidence. And Doug wound up gardening with some of the
women on the street and Doug wound up, you know having beers with some of the
men when they came home from work who liked to sit on the porch and have beers,
and he wound up, you know sharing the interest in the New York Yankees. And
another guy we worked for, Chris wound up with a job a couple blocks away at a
food pantry when his PA wandered down there and got to know those people. So
there's something about about the PAs themselves building their social capital
without having the direct pressure on what's gonna be the outcome for Doug or
for Chris or for someone else, that opened up all these opportunities. And a
much more organic way of developing connections isn't it, than just kind of
thinking right we've got this gift, we want them to do this, right where can we
go. It's much more natural. Well it is, and I think sometimes when we, when we
identify the gift and then we say we're gonna have an outcome, we're gonna find a
way to connect this gift, and so-and-so is going to have a job, we become so
focused on getting to that outcome, we miss all those wonderful side steps
along the way, like the other gardeners and the beer drinkers and the Yankees
fans and the food pantry down the road, because we're focused on getting this
job over here that's going to do this specific thing. So leaving that open a
little bit, created space for other wonderful things to emerge for people. So
Dave you all about communities; something else that's sort of
triggering concerns in my head from my perspective is that we've done all this
lovely work, we've identified gifts, we've we've found a place in the community etc
And then you go along and you hit a bit of a barrier. And there's a gatekeeper or
there's, you don't quite get the reaction that you're expecting but you
still feel that this is a good thing you need to be. How do we get over that, how
do we persuade people that this is a good thing?
I think it's actually related to what Patti was talking about though. Is two
things. One is, we need to know what the community needs; the thing beyond us that
it needs. Which is part of what Patti's talking about in this whole idea
building social capital. And social capital is built first by listening. So
you got to find out. And then you need the imagination to really be able to
think about how what someone, anyone has to offer that whole. So you have, you do
have to do that work of actually being able to imagine that this person
actually has something of value to offer. And where might be the best place for
that to happen. So I think that's a lot of what the work that Patti's talking
about in all that. You mentioned earlier just the idea of being brave. I think
it's important to just start with that as a starting place. What does it take to
be brave? And one of the things is, don't be alone. It's actually really difficult
to do things by yourself. And so for a parent, who are the people that you turn
to for courage? The people that you can go to after your hearts been broken in a
million different ways along the way? The people who are the affirmers, that kind
of are with you. And the people who actually can accompany you. I mean somebody
who's not going to even have the same kind of hurt factor that's available to
a parent, who is slightly removed but is willing to accompany because they love
you, or they care about you, or they know you. So I think that courage is really
important thing. The truth is is that we have
structured the world in such a way as to be incredibly discriminatory, incredibly
prejudiced, and incredibly hurtful. That is the reality that we're starting with.
So we do need to actually acknowledge that we need courage, and for that we
need people who can actually be with us as our heart is raw and help us to say
there's a way to get up, there's a way to do the next thing. And also bring
perspective. I think one of the other things that's been really clear for us
is that having more perspectives on the same story are really important, because
as a parent I might only be viewing it as a parent, but if somebody else is
viewing the same situation from a different perspective they can see a
different way to approach it. And so not being alone is a critical factor in this.
And it's a critical factor for your son or your daughter, or whoever you have in
your life, but it's also a critical factor for a parent who, especially in
those early years, is the kind of introducer to the world of somebody. So
how are you not alone. And some of it comes from the people who understand
your experience, some of the parents that you would meet through a Partner's
course and all that kind of stuff. But some of it are just the people who love you
because they were your mate in high school and or they were your college
friend or whatever that is that can be with you and how do you keep that
connection going because you need that courage. Does that make any sense? No it does,
absolutely, and I'm learning so much from this conversation already! But
you're so right, taking somebody along; I've heard
someone describe it as, not diving alone, you know have somebody with you.
That is great advice. Can I just add one thing? To what Dave said. I think the idea of perseverance too, and
not giving up. And I'm speaking about this more from the point of view of the work, but
I think too often people who do this work, they give up after one time or two
times if something doesn't work out. And if we think about it for our own lives
we can often take quite a bit of time to develop friendships and find connections,
and find the right places to be. And from an organisational point of view one of
the things we like to think about is, celebrating the things that don't work.
Because if you try something and it doesn't work and you learn something,
like, whoops the hospital is not the right place to do this, that's to be
celebrated, it means you're taking risks, it means you're trying things. So
it's not that the the failure's a bad thing, because for any of us in
order to get somewhere in life we make lots of mistakes and we learn from those
mistakes. And I think what often happens for people with a label of a disability,
if something doesn't work out that's it. We say, oh that's never gonna work. Or
this can't happen for that person or this isn't really a gift. And it's
shifting that thinking, and think, ah we learned something about where this
gift isn't as welcome, or where it's not as useful, but let's find the place
where it is. And creating that kind of culture and that kind of approach I
think makes a big difference. And I think, something I wonder is if we also
have a, part of our work is to educate the people that we're coming across. So
if the first response isn't quite what we expect, as you're saying persevere, it
may just be that we need to show them the way. Yeah. Yeah I agree with that too.
And I think we educate by doing, right? So when Joy was fired from the hospital,
Joy's sending them a thank-you note for the opportunity. Those kind of things.
And helping Joy to do that obviously, but those are the kind of things that make a
difference, right. That's how you educate by how you introduce people, how
you relate with people, how you support people to relate. Because when people
start to see people differently, that's where, that's where the education really
takes hold. I think there's a phrase out there that's used often now called,
assume competence. I think there is an equivalent of assume giftedness, and I
think there's also, assume that there is a community
that wants the gift that somebody has to offer. And part of it is just all, how do
you change your frame of reference for what you're doing in the first place. One
of the things that we, one of the greatest harms that I've observed that
we've done to people with disabilities and their families, is actually made them
needy. And so people start to approach the community because they need
something. It's the wrong approach. A community, John McKnight used to say
something along the lines of, your problem is useless in a community. What you
have to offer is what is valuable in community. And so the difficulty for
families is we literally have forced people to think about their neediness at
the expense of what they have to offer. And the community is only going to be
really benefiting from that. Now that may come through somebody's personal need.
Like you you may enter into a relationship with somebody because, as a
personal assistant ,you may have entered into it really and then discovered all
this other stuff that comes in that relationship, but it wasn't the
problem that was actually, it was actually what the person had that other
people needed to experience. So it's kind of like we need to shift the perspective,
and the earlier a parent can shift that perspective, and imagine that there is a
future down the road where their son or daughter actually is in the place of
bringing something to a wider body of people, if you hold on to that vision
throughout, it changes the way you think about all the problems again. We have a
friend in Ohio who's doing some work now with families, and what he's doing is
he's giving families a certain amount of money, just a cash money and there's some
things contingent upon that; they they meet with him each week and talk about
what they're gonna do. But it enables that family, as a family, to do something in
their community that's meaningful to them, that will help the family
as a family build social capital. And he has some wonderful stories around what
people have developed around gardens or quilting groups. Where they use the money
to do quilting lessons for people in the neighbourhood who are interested in
quilting and they started this quilting group. But it helped both the family
member with a disability to be a part of something, but help the family as a
family to start to build their social capital. And I think there's there's
something to be said for that along the lines of what Dave is saying. It's about
instead of families needing family support, it's about letting the family, or
the person with the label, kind of take the lead in building something in their
neighbourhoods. So they're the ones bringing something to the neighbourhood
that's helping the other citizens in the the neighbourhood. And it's just it's a
kind of turning the approach on its head but I think it's really really
interesting. Yeah. It's been an absolute pleasure having you here to chat to. I'm
so pleased that you managed to fit me in, because it feels, I'm slightly fangirl having,
having you sit here in front of me. Because the last time we met was at Partners in
Policymaking, and and you were speaking to us as a room, and really challenged
us all and and gave us a lot to think about. And I still think back to the
stories that you told us there. So it's fantastic having you here. And I think
we've covered some super important points and and it's even just in the
last 10, 20 minutes has changed my thinking on its head and really
challenged me, so I am absolutely sure it's going to do that for everybody
watching, so thank you so much.
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