January 7, 2020 • 25 mins
What role does safety play in future planning? Can we really plan for a safer future? In this episode of Focus on the Future, host Allycia Wolff interviews Dr. Nancy Fitzsimons. Dr. Fitzsimons is a professor of social work at Mankato State University. She is also a board member of The Arc Minnesota. In their conversation, Allycia Wolff and Dr. Fitzsimons discuss how we can empower our children and re-think what it means to be safe.
About Dr. Nancy Fitzsimons
Dr. Fitzsimons earned her MSW and PhD from the University of Illinois at Chicago (UIC), Jane Addams College of Social Work and her Bachelor of Science in Social Work from Mankato State University. Her area of concentration has been in developmental disabilities, disability policy and services, and preparation of social workers for practice with people with disabilities. At Mankato State University, she teaches graduate and undergraduate courses in social welfare history, services and policy; social work policy practice, task groups, macro social work practice; and social work practice with people with disabilities and their families. Dr. Fitzsimons serves on the board of The Arc Minnesota. In 2015, Governor Mark Dayton appointed her as a representative to the Minnesota State Council on Disability.
About Focus on the Future
You can find more information about Focus on the Future at arcminnesota.org/podcast. If Episode 7 inspired a question for an Arc Advocate, call The Arc Minnesota at 833.450.1494.
Focus on the Future is a podcast for caregivers and families supporting people with disabilities. In each episode, a conversation about the journey of discovering our best life and how to achieve it. While exploring legal, financial, and quality of life structures, Focus on the Future aims to get back to what matters most: living a fulfilling and meaningful life that is defined by each individual person.
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Transcript
Episode Transcript
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Music (00:04):
[music playing]
Allycia Wolff (00:04):
Welcome to Focus on the Future, a future planning
podcast for caregivers andfamilies, supporting people with
disabilities.
Focus on the Future is a podcastof The Arc Minnesota, a
nonprofit organizationadvocating for folks with
intellectual and developmentaldisabilities.
My name is Allycia Wolff.
I'm an advocate here at The ArcMinnesota, and your host for
(00:24):
Focus on the Future.
In this week's episode Iinterviewed Dr.
Nancy Fitzsimons, who's aprofessor out of Mankato State
University, about what it meansto do safer future planning.
One of the biggest notes that Iget from parents is the fear and
concern for their child's safetyin the future.
And so I figured that this wouldbe a really important podcast
(00:47):
episode to focus on.
So join us as we walk throughthis conversation.
Music (00:55):
[ music playing]
Dr. Fitzsimons (00:55):
I want to challenge everybody to presume
your own competence.
Presume that you can empoweryour son or daughter to be their
best self.
Right?
And come to this from thatnotion of sharing power with and
helping them to develop thepower within and just know that
(01:16):
for every individual, there'salways something we can do to
help them to be safer.
And to live a happier, healthierlife.
Music (01:36):
[ music playing]
Allycia Wolff (01:36):
Today we're going to take a broader look at future
planning.
Take a step back and think whatthe underlying thing that we're
trying to really accomplish hereis.
And at the end of the day, Ireally think that's about
planning for a safer future.
So we're going to talk about allof the different elements of
safer future planning becausewhen it comes down to it, that's
(01:59):
the root of why we do futureplanning...is fear.
Now, don't get me wrong, thereis a lot of hope and promise and
opportunity and joy, but thereason that we do estate
planning and intentional futureplanning is, in big part, the
worry that we have.
People don't tend to wake up inthe middle of the night and say,
(02:20):
"Oh, I'm living life with suchease and such promise."
Unfortunately people are wakingup in the middle of the night
out of fear and concern.
So let's talk about it a bit.
Not necessarily the fear part,but the, what we can do about it
part.
And before we create a way outof that fear, it may be helpful
(02:44):
for us to note some of thetrends that I've noticed over
the past two years, working withfamilies as they plan for the
future of the lives of theirloved ones with disabilities.
And what I've noticed are thereare a few main components of
what it means to live a safelife and to do safe future
planning.
(03:04):
And Dr.
Nancy Fitzsimons has been kindenough to come in and chat with
me about her work in this area.
She's really dedicated hercareer to rethinking safety and
how people with disabilities canlive good, happy, safe lives.
And what we kind of pulled outin this conversation was the
different pieces ofinterdependence, vulnerability,
(03:28):
and competence.
These are all pillars in thediscussion of safer future
planning.
So as we walk through theinterview with Nancy, I will be
adding in some things toconsider along the way.
Good morning, Dr.
Nancy Fitzsimons.
Thank you for coming in to thepodcast today.
(03:51):
Welcome.
Dr. Fitzsimons (03:52):
Thank you for inviting me.
Allycia Wolff (03:53):
Yeah, I would love if we could start by you
introducing yourself.
Dr. Fitzsimons (03:59):
Sure.
Well, as you said, I'm NancyFitzsimmons.
Currently I'm a professor ofsocial work at Minnesota State
Mankato.
I'm a native Minnesotan.
And my first social work jobwhen I moved to Chicago,
Illinois was to work withfamilies who had children with
intellectual and developmentaldisabilities.
And that led to most of mycareer somehow connected to
(04:22):
people with disabilities in avariety of different jobs and
capacities, which sort of bringsme to today and teaching social
work and serving on the board ofArc and the chair of the Council
on Disability doing a variety ofthings as an ally with people
with disabilities.
Allycia Wolff (04:41):
And so now you are working at Mankato State and
you have a variety of differentclasses that you are teaching
students and you just wrote abook recently, right?
And you're working on anotherone.
Dr. Fitzsimons (04:53):
Well, the book I wrote is now, it was written in
2009 so it's been quite a while.
And that book focused onviolence and abuse in the lives
of people with disabilities.
So yes, I'm working on a secondbook, a followup to that one,
that is really what I call thedanger of the single story, the
danger of a single story ofdisability, of vulnerability and
(05:15):
the single solution ofprotection.
So probably over the last 20some years, a lot of the work
that I've done has been focusedaround the problem of what I
call interpersonal violence, butmany people refer to as abuse
and neglect of people withdisabilities.
That's been my primary focus.
Allycia Wolff (05:32):
Great.
I know that we are all lookingforward our, to your book here.
Personally, I am for sure.
I wanted to now start theconversation into safer future
planning, just really broadlyand generally, in thinking about
how people can prepare and whatpeople can do to support their
(05:53):
child in really actuallyplanning for a safe future.
Dr. Fitzsimons (05:59):
We don't do people with intellectual
developmental disabilities aservice if we think that somehow
we need to create a separatespecial, you know, different way
of approaching life's issuesbecause they have a disability,
(06:19):
than you would do if your childdid not have an intellectual or
developmental disability.
That we need to sort of reallystep back and think about again,
how do you take whatever yourson or daughter's strengths,
(06:40):
abilities needs are and that yousupport them in becoming their
best self, right, their mostself-determined self.
And that you model that foreverybody around in their lives
(07:02):
so that they know, right, thattheir expectations about how we
support and treat their son anddaughter, this person, right.
You've modeled that, you've setthe standard and the
expectation.
And that you're not afraid tohave the difficult conversations
(07:23):
and that you're gonna pick up onsomething isn't quite right and
that people know that and thatyou're going to believe that
you're, you know...
And I think that when you dothat, it sets the stage for
everybody else around in lifeknowing, again, I'm either going
to get on board and support thisperson in the way from a place
(07:49):
of respect and supporting theirassertiveness and supporting
them as a complete human being,or I'm not.
And if I don't, people are goingto notice and they're going to,
they're going to hold meaccountable.
They're gonna hold the systemaccountable and then that
individual is going to besupported and having their best
(08:11):
life.
So we just...you know, I want tochallenge everybody to presume
your own competence.
Presume that you can empoweryour son or daughter to be their
best self.
Right?
And come to this from thatnotion of sharing power with and
(08:33):
helping them to develop thepower within.
And just know that for everyindividual there's always
something we can do to help themto be safer and to live a
happier, healthier life beyondthe fallacy of this protective
(08:55):
bubble.
That you can do this! And youwill feel empowered and as you
feel empowered, that willempower your son and daughter
and together.
Like, I mean, there's somethingbeautiful about that becoming
empowered together, presumingcompetence together.
Allycia Wolff (09:10):
It's that true inner connectedness.
Dr. Fitzsimons (09:14):
Absolutely that true interdependence.
Right?
And that's how we will changethe world.
Really.
I believe this for people withintellectual and developmental
disabilities.
We will change it through this,right?
We will change it through oursort of...
And it starts at the beginningwith family and home, and then
we move this to all the peoplearound that support people
(09:36):
through education, through work,where people live.
But it starts with parents andsiblings to really believe in
their family members, and tosort of cocreate this
interdependence based oncompetence and empowerment and
respect.
Yeah.
Allycia Wolff (09:55):
Thank you.
Along with that conversation ofinterdependence and how we have
people in our life that we relyupon.
I think back to a Ted talk donealmost 10 years ago now by Brene
Brown.
Probably one of the most popularTed talks that has ever existed.
(10:17):
And it's launched Brene Browninto this whole conversation
about vulnerability as a generalpopulation.
And Brene Brown said,"Connectionis why we are here.
It gives power and meaning toour lives.
And as I watched her Ted talkrecently, I was thinking about
how, when Brene Brown talksabout vulnerability, she talks
(10:40):
about a differently than how wetalk about it in the community
of supporting people withdisabilities.
She talks about vulnerability asbeing a view into yourself that
you're not really sure that youwant people to see and you're
open and you're honest andyou're raw.
And then when we talk aboutvulnerability for people with
(11:02):
disabilities, it's more aroundan abuse context.
And so I just wanted to considerhow these things are being
talked about in different ways,but then also how they align and
how vulnerability is somethingthat we all struggle with and we
can all take active stepstowards embracing vulnerability,
(11:24):
recognizing what it is that itdoes to us and then how to move
forward with that.
So that brings me to thisanalogy that I've been thinking
about a lot recently in mycareer and that is that, I truly
believe that nobody is anisland, and we all need people
(11:46):
to support us and help us alongthe way.
And too often when I'm havingconversations with families and
with people, it is very much aconversation of, okay, well I
want to be independent.
I want to live on my own, I wantto have my own apartment.
I want to be completelyindependent, but that's not
often a conversation that I haveamongst my friends is like, what
(12:08):
kind of life do you want tolive?
Everybody wants to be safe andhappy and healthy and all of
those things, but I as a humandon't want to be independent.
I want to be interdependent.
I want to have friends that Irely on and people that rely on
me and too often the focus forpeople with disabilities is to
be completely independent.
And I know what parents aresaying when when they say that
(12:29):
they want that for their childor what people with disabilities
are saying is they want to, youknow, be able to live the
American dream.
You know, pull themselves upfrom their bootstraps and be
able to do their whole lives ontheir own.
But you've done a lot ofresearch and study into the
difference betweeninterdependence and
independence.
How do you talk to your classesand students and just what are
your thoughts on that?
Dr. Fitzsimons (12:50):
Right.
Well I think it's, I mean thisis one of the areas that I've
been thinking more recentlyabout and I've had conversations
with people and who sort of geta little uncomfortable when we
say interdependent, because weare still striving so much for
people to have a life of theirown, right.
But a life of your own, of yourown choice of your own making,
(13:14):
you know, that fits your rhythmsand paces and patterns and
desires of life isn't synonymouswith independence.
It actually is synonymous Ithink with interdependence and
that what we really need to befocusing more on is like, self
determination in people's lives,you know, and autonomy, meaning
you determine the kind of lifeyou want and then we create, you
(13:38):
know, the supports and thenetwork to make that happen.
And that's really whatinterdependence is.
And I appreciate you talkingabout like in your own life, um,
that we need to move away fromsomebody is going to be all on
their own in this island.
No.
Interdependence is, really tome, rethinking about...that is
(14:00):
so connected to rethinking aboutvulnerability and safer.
And I use the concept of saferplanning, not safety and not
being safe because there's nosuch thing, but we can be safer
and we can be safer throughinterdependence.
And what I mean by that is whoare the people in your life,
(14:22):
whether it's family and friends,whether it's paid caregivers and
staff, whether it's people inthe places that you live, learn,
work and play in your community.
Like who are the people in yourworld, right, that you can count
on for different things.
And we start to figure out whatthose different things are that
(14:44):
are going to be there to supportsomebody to problem solve.
You know, to help think throughthe right options are, or to go
to when something, when you'refrightened, when something is
happening that you're uncertainabout or uncomfortable or when
something bad happens, likeabuse, right?
Or where you feel somebody isneglecting your care.
(15:05):
If we really emphasizeinterdependence, what that means
is that people have a network ofpeople and resources and places
to go to.
And that's actually what most ofus do, right?
I know in like our own work, andwhen we teach social workers, a
lot of what we're doing withpeople is trying to sort of find
out, well like who's in yourlife and who are the people in
(15:29):
your life that build you up?
Who are the people that are inyour life that help you to be
the person you want to be, thebetter person you know, and
support you and make you feelgood about yourself.
Okay.
So let's, how do we, how do weconnect more with those people?
Where are there pockets whereyou need more people in your
life and you want more people inyour life?
Well, let's find, well, youknow, what or where might people
(15:52):
be.
And then who are the people inyour life who, you know, who
really contribute to harm, theymake you feel bad about yourself
and whether or not they'rephysically harming you or
neglecting you or they'reperpetrating, you know, some
type of violence or whetherthey're just treating you in
ways that are disrespectful anddon't help you to be your best
(16:15):
self.
Well then we need to get thosepeople either out of your life
or we need to change the way inwhich those people treat you.
Allycia Wolff (16:24):
Treat you.
Hm-mmmm.
Dr. Fitzsimons (16:26):
And interact with you.
Right?
And so interdependence, if westart rethinking it that way,
with quality relationships, therelationships and the quality of
those relationships matter inthe places where people live,
learn, work and play andworship.
That right there in and ofitself contributes to reversing
(16:47):
vulnerability to harm beingperpetrated.
And when harm is perpetrated,you have a network of people who
will support you and help youget through that.
Allycia Wolff (16:56):
When one shares a life with people that they get
joy from and feel supported fromand have more of like a
symbiotic relationship with,they feel more empowered to make
their own choices.
And I know that I've seen it inmy own personal life.
When I have people in my lifethat encourage me and believe in
(17:17):
me, then I am more able tofollow my dreams and to feel
supported because I know that ifI fail or something goes wrong,
I have people to reach out.
And basically that's what Nancyand I are talking about in this
whole interview.
Now the next piece that we aregoing to move into is the
conversation aboutvulnerability.
Vulnerability is something thatcomes up often in having a
(17:42):
conversation about futureplanning is the concern about
vulnerability.
And so this is just a slightlyway to think about it.
And Nancy talks a lot about howvulnerability, at the core of
it, is really power.
And she has this tool, that ifyou're interested in, you can
definitely look into, that sherefers to, it's a wheel of power
(18:05):
and control based off of acaregiver and a person receiving
care and support.
And so it's what a healthyrelationship looks like in that
power and control dynamic.
And what an unhealthyrelationship looks like.
So here is Nancy talking abouther relationship and experience
with vulnerability.
Dr. Fitzsimons (18:28):
There's this important concept of sharing
power with, not power over.
And what we need to help supportpeople in doing is developing
the power within themselves.
So we need to talk about, likeone of the self-advocates that
I've been connected to for manyyears...
(18:49):
you know, her name is Heidi.
And Heidi says,"Oh, you mean allthe, you know, the good stuff.
Yep, we need to talk about thegood stuff and the bad stuff,
not just the bad stuff." Butalso the good stuff
simultaneously so that we make astark contrast between, this is
how you deserve to be treated byother people, and this is
(19:13):
unacceptable treatment by otherpeople.
And then we have to delve intothe weeds of some of that gray
stuff.
And what I mean by that is whatI call some of the ways in which
we treat people, the dailyindignities that may not seem
harmful on the surface, but Ithink that really destroy
(19:34):
people's sense of selfdetermination.
Allycia Wolff (19:37):
What is a daily indignity?
What's an example that you couldgive?
Dr. Fitzsimons (19:41):
An example of that would be making decisions
for somebody else about everyaspect of their life.
What time they get up in themorning, what they eat for
breakfast, whether they make thebed or they don't make the bed,
you know, if they wash thedishes and when they wash the
dishes.
I mean, for some people theirlives are so controlled by what
(20:04):
other people want them to do,when they want to do that.
And to me that's an a day that'san indignity.
That's a daily indignity, whichtakes away sort of, a person's
sense of self and how they wantto live their life, what is
important to them.
And when we do that in all thelittle things, we shouldn't be
(20:26):
surprised when people aretreated in what we all would say
like, that is really hurtful,like that is abuse.
And that people don'tnecessarily really recognize
that.
They just go along thinking, youknow what, I'm just going to go
along to get along and hopefullypeople won't hurt me.
(20:47):
So we shouldn't be surprisedwhen some really horrible things
happen to people.
And we find out about it sixmonths later, a year later, two
years later, five years later,and we say, why didn't they say
something?
Well, if your entire life iscontrolled by other people in
(21:08):
all of the little tiny ways, ifpeople don't really seem to care
much about what you want or whatyou think, people don't really
have that great of expectationsof you, that you have a point of
view, then why would you assertyourself?
So if we, if we help to empowerpeople in all the little ways in
(21:32):
their life, they will have morestrength and courage to tell us
about the really bad thingsgoing on in their life.
Allycia Wolff (21:44):
Part of Brene Brown's Ted talk on
vulnerability gets to the themeof worthiness and she says that
people that are able to live ahappy and joyful life are
vulnerable to all of the goodand bad things that happen.
And what is consistent withthese people that are open to
(22:09):
being vulnerable andexperiencing the good along with
the bad, is this feeling ofworth and this feeling that I
deserve to be treated withrespect.
And you can see it is in directalignment with all the things
that Nancy and I have beentalking about through this
interview as well, is whenpeople know that they deserve to
(22:32):
be treated with respect, thenthey are inherently then less
vulnerable.
And it's, it's been reallyinteresting to me to see these
two conversations play togetherand how when people recognize
themselves as valuable worthyhumans, then they are in fact
(22:53):
safer and will live a saferlife.
And as we think overall aboutsafer future planning.
Here's a little note from Nancyabout what she tries to think
about overall in this journey.
Dr. Fitzsimons (23:12):
Yeah, I think it goes back to, I know that every
parent listening to this has thebest of intentions, right, for
their son or daughter or theirfamily member, your brother or
sister or aunt or uncle.
And I think the challenge forall of us is to just go back and
start thinking about what's theimpact.
(23:34):
And yep, sometimes you have to,I mean I think the growth and
learning, my own growth andlearning, has come from the
ability to just sort of unpackand be sort of real about all of
the things that I am sure I havedone in my 30 plus year career
that probably weren't ashelpful, maybe were even
harmful.
But there's a quote by Dr.
(23:54):
Maya Angelou that is somethinglike, I did then what I knew
then and when I knew better, Idid better.
And to me I just try to live bythat.
Like, you know, as I knowbetter, I do better.
And I think that that's just theway that I think we need to
approach this.
Music (24:18):
[ music playing]
Allycia Wolff (24:18):
If this episode inspired questions for an
advocate at The Arc, please giveus a call at 883.450.1494.
On the next episode of Focus onthe Future, I will be talking
about building community andfriendships and belonging and
ways that we as humans canconnect with other people.
(24:39):
Focused on the Future is apodcast of The Arc Minnesota.
Subscribe to the podcast on yourfavorite streaming service to
stay up to date with all thenewest episodes.
And if you feel so inclined,please leave us a review to let
us know how we're doing or anycontent that you are hoping for
in the future.
If you're enjoying listening,you can also support The Arc and
(25:00):
our mission by donating atarcminnesota.org/podcast.
Our podcast music is composedand recorded by Micah Kadwell.
Micah is a guitarist from NewBrighton, Minnesota, and he also
has autism.
Thanks, Micah.
Focus on the future is producedby Chloe Ahlf and myself and
(25:21):
engineered by Brent Nelson.
Thank you Chloe and Brent.
Have a great day everyone.
See you next time.
Music (25:30):
[ music playing]
[music playing]
Allycia Wolff (00:04):
Welcome to Focus on the Future, a future planning
podcast for caregivers andfamilies, supporting people with
disabilities.
Focus on the Future is a podcastof The Arc Minnesota, a
nonprofit organizationadvocating for folks with
intellectual and developmentaldisabilities.
My name is Allycia Wolff.
I'm an advocate here at The ArcMinnesota, and your host for
(00:24):
Focus on the Future.
In this week's episode Iinterviewed Dr.
Nancy Fitzsimons, who's aprofessor out of Mankato State
University, about what it meansto do safer future planning.
One of the biggest notes that Iget from parents is the fear and
concern for their child's safetyin the future.
And so I figured that this wouldbe a really important podcast
(00:47):
episode to focus on.
So join us as we walk throughthis conversation.
Music (00:55):
[ music playing]
Dr. Fitzsimons (00:55):
I want to challenge everybody to presume
your own competence.
Presume that you can empoweryour son or daughter to be their
best self.
Right?
And come to this from thatnotion of sharing power with and
helping them to develop thepower within and just know that
(01:16):
for every individual, there'salways something we can do to
help them to be safer.
And to live a happier, healthierlife.
Music (01:36):
[ music playing]
Allycia Wolff (01:36):
Today we're going to take a broader look at future
planning.
Take a step back and think whatthe underlying thing that we're
trying to really accomplish hereis.
And at the end of the day, Ireally think that's about
planning for a safer future.
So we're going to talk about allof the different elements of
safer future planning becausewhen it comes down to it, that's
(01:59):
the root of why we do futureplanning...is fear.
Now, don't get me wrong, thereis a lot of hope and promise and
opportunity and joy, but thereason that we do estate
planning and intentional futureplanning is, in big part, the
worry that we have.
People don't tend to wake up inthe middle of the night and say,
(02:20):
"Oh, I'm living life with suchease and such promise."
Unfortunately people are wakingup in the middle of the night
out of fear and concern.
So let's talk about it a bit.
Not necessarily the fear part,but the, what we can do about it
part.
And before we create a way outof that fear, it may be helpful
(02:44):
for us to note some of thetrends that I've noticed over
the past two years, working withfamilies as they plan for the
future of the lives of theirloved ones with disabilities.
And what I've noticed are thereare a few main components of
what it means to live a safelife and to do safe future
planning.
(03:04):
And Dr.
Nancy Fitzsimons has been kindenough to come in and chat with
me about her work in this area.
She's really dedicated hercareer to rethinking safety and
how people with disabilities canlive good, happy, safe lives.
And what we kind of pulled outin this conversation was the
different pieces ofinterdependence, vulnerability,
(03:28):
and competence.
These are all pillars in thediscussion of safer future
planning.
So as we walk through theinterview with Nancy, I will be
adding in some things toconsider along the way.
Good morning, Dr.
Nancy Fitzsimons.
Thank you for coming in to thepodcast today.
(03:51):
Welcome.
Dr. Fitzsimons (03:52):
Thank you for inviting me.
Allycia Wolff (03:53):
Yeah, I would love if we could start by you
introducing yourself.
Dr. Fitzsimons (03:59):
Sure.
Well, as you said, I'm NancyFitzsimmons.
Currently I'm a professor ofsocial work at Minnesota State
Mankato.
I'm a native Minnesotan.
And my first social work jobwhen I moved to Chicago,
Illinois was to work withfamilies who had children with
intellectual and developmentaldisabilities.
And that led to most of mycareer somehow connected to
(04:22):
people with disabilities in avariety of different jobs and
capacities, which sort of bringsme to today and teaching social
work and serving on the board ofArc and the chair of the Council
on Disability doing a variety ofthings as an ally with people
with disabilities.
Allycia Wolff (04:41):
And so now you are working at Mankato State and
you have a variety of differentclasses that you are teaching
students and you just wrote abook recently, right?
And you're working on anotherone.
Dr. Fitzsimons (04:53):
Well, the book I wrote is now, it was written in
2009 so it's been quite a while.
And that book focused onviolence and abuse in the lives
of people with disabilities.
So yes, I'm working on a secondbook, a followup to that one,
that is really what I call thedanger of the single story, the
danger of a single story ofdisability, of vulnerability and
(05:15):
the single solution ofprotection.
So probably over the last 20some years, a lot of the work
that I've done has been focusedaround the problem of what I
call interpersonal violence, butmany people refer to as abuse
and neglect of people withdisabilities.
That's been my primary focus.
Allycia Wolff (05:32):
Great.
I know that we are all lookingforward our, to your book here.
Personally, I am for sure.
I wanted to now start theconversation into safer future
planning, just really broadlyand generally, in thinking about
how people can prepare and whatpeople can do to support their
(05:53):
child in really actuallyplanning for a safe future.
Dr. Fitzsimons (05:59):
We don't do people with intellectual
developmental disabilities aservice if we think that somehow
we need to create a separatespecial, you know, different way
of approaching life's issuesbecause they have a disability,
(06:19):
than you would do if your childdid not have an intellectual or
developmental disability.
That we need to sort of reallystep back and think about again,
how do you take whatever yourson or daughter's strengths,
(06:40):
abilities needs are and that yousupport them in becoming their
best self, right, their mostself-determined self.
And that you model that foreverybody around in their lives
(07:02):
so that they know, right, thattheir expectations about how we
support and treat their son anddaughter, this person, right.
You've modeled that, you've setthe standard and the
expectation.
And that you're not afraid tohave the difficult conversations
(07:23):
and that you're gonna pick up onsomething isn't quite right and
that people know that and thatyou're going to believe that
you're, you know...
And I think that when you dothat, it sets the stage for
everybody else around in lifeknowing, again, I'm either going
to get on board and support thisperson in the way from a place
(07:49):
of respect and supporting theirassertiveness and supporting
them as a complete human being,or I'm not.
And if I don't, people are goingto notice and they're going to,
they're going to hold meaccountable.
They're gonna hold the systemaccountable and then that
individual is going to besupported and having their best
(08:11):
life.
So we just...you know, I want tochallenge everybody to presume
your own competence.
Presume that you can empoweryour son or daughter to be their
best self.
Right?
And come to this from thatnotion of sharing power with and
(08:33):
helping them to develop thepower within.
And just know that for everyindividual there's always
something we can do to help themto be safer and to live a
happier, healthier life beyondthe fallacy of this protective
(08:55):
bubble.
That you can do this! And youwill feel empowered and as you
feel empowered, that willempower your son and daughter
and together.
Like, I mean, there's somethingbeautiful about that becoming
empowered together, presumingcompetence together.
Allycia Wolff (09:10):
It's that true inner connectedness.
Dr. Fitzsimons (09:14):
Absolutely that true interdependence.
Right?
And that's how we will changethe world.
Really.
I believe this for people withintellectual and developmental
disabilities.
We will change it through this,right?
We will change it through oursort of...
And it starts at the beginningwith family and home, and then
we move this to all the peoplearound that support people
(09:36):
through education, through work,where people live.
But it starts with parents andsiblings to really believe in
their family members, and tosort of cocreate this
interdependence based oncompetence and empowerment and
respect.
Yeah.
Allycia Wolff (09:55):
Thank you.
Along with that conversation ofinterdependence and how we have
people in our life that we relyupon.
I think back to a Ted talk donealmost 10 years ago now by Brene
Brown.
Probably one of the most popularTed talks that has ever existed.
(10:17):
And it's launched Brene Browninto this whole conversation
about vulnerability as a generalpopulation.
And Brene Brown said,"Connectionis why we are here.
It gives power and meaning toour lives.
And as I watched her Ted talkrecently, I was thinking about
how, when Brene Brown talksabout vulnerability, she talks
(10:40):
about a differently than how wetalk about it in the community
of supporting people withdisabilities.
She talks about vulnerability asbeing a view into yourself that
you're not really sure that youwant people to see and you're
open and you're honest andyou're raw.
And then when we talk aboutvulnerability for people with
(11:02):
disabilities, it's more aroundan abuse context.
And so I just wanted to considerhow these things are being
talked about in different ways,but then also how they align and
how vulnerability is somethingthat we all struggle with and we
can all take active stepstowards embracing vulnerability,
(11:24):
recognizing what it is that itdoes to us and then how to move
forward with that.
So that brings me to thisanalogy that I've been thinking
about a lot recently in mycareer and that is that, I truly
believe that nobody is anisland, and we all need people
(11:46):
to support us and help us alongthe way.
And too often when I'm havingconversations with families and
with people, it is very much aconversation of, okay, well I
want to be independent.
I want to live on my own, I wantto have my own apartment.
I want to be completelyindependent, but that's not
often a conversation that I haveamongst my friends is like, what
(12:08):
kind of life do you want tolive?
Everybody wants to be safe andhappy and healthy and all of
those things, but I as a humandon't want to be independent.
I want to be interdependent.
I want to have friends that Irely on and people that rely on
me and too often the focus forpeople with disabilities is to
be completely independent.
And I know what parents aresaying when when they say that
(12:29):
they want that for their childor what people with disabilities
are saying is they want to, youknow, be able to live the
American dream.
You know, pull themselves upfrom their bootstraps and be
able to do their whole lives ontheir own.
But you've done a lot ofresearch and study into the
difference betweeninterdependence and
independence.
How do you talk to your classesand students and just what are
your thoughts on that?
Dr. Fitzsimons (12:50):
Right.
Well I think it's, I mean thisis one of the areas that I've
been thinking more recentlyabout and I've had conversations
with people and who sort of geta little uncomfortable when we
say interdependent, because weare still striving so much for
people to have a life of theirown, right.
But a life of your own, of yourown choice of your own making,
(13:14):
you know, that fits your rhythmsand paces and patterns and
desires of life isn't synonymouswith independence.
It actually is synonymous Ithink with interdependence and
that what we really need to befocusing more on is like, self
determination in people's lives,you know, and autonomy, meaning
you determine the kind of lifeyou want and then we create, you
(13:38):
know, the supports and thenetwork to make that happen.
And that's really whatinterdependence is.
And I appreciate you talkingabout like in your own life, um,
that we need to move away fromsomebody is going to be all on
their own in this island.
No.
Interdependence is, really tome, rethinking about...that is
(14:00):
so connected to rethinking aboutvulnerability and safer.
And I use the concept of saferplanning, not safety and not
being safe because there's nosuch thing, but we can be safer
and we can be safer throughinterdependence.
And what I mean by that is whoare the people in your life,
(14:22):
whether it's family and friends,whether it's paid caregivers and
staff, whether it's people inthe places that you live, learn,
work and play in your community.
Like who are the people in yourworld, right, that you can count
on for different things.
And we start to figure out whatthose different things are that
(14:44):
are going to be there to supportsomebody to problem solve.
You know, to help think throughthe right options are, or to go
to when something, when you'refrightened, when something is
happening that you're uncertainabout or uncomfortable or when
something bad happens, likeabuse, right?
Or where you feel somebody isneglecting your care.
(15:05):
If we really emphasizeinterdependence, what that means
is that people have a network ofpeople and resources and places
to go to.
And that's actually what most ofus do, right?
I know in like our own work, andwhen we teach social workers, a
lot of what we're doing withpeople is trying to sort of find
out, well like who's in yourlife and who are the people in
(15:29):
your life that build you up?
Who are the people that are inyour life that help you to be
the person you want to be, thebetter person you know, and
support you and make you feelgood about yourself.
Okay.
So let's, how do we, how do weconnect more with those people?
Where are there pockets whereyou need more people in your
life and you want more people inyour life?
Well, let's find, well, youknow, what or where might people
(15:52):
be.
And then who are the people inyour life who, you know, who
really contribute to harm, theymake you feel bad about yourself
and whether or not they'rephysically harming you or
neglecting you or they'reperpetrating, you know, some
type of violence or whetherthey're just treating you in
ways that are disrespectful anddon't help you to be your best
(16:15):
self.
Well then we need to get thosepeople either out of your life
or we need to change the way inwhich those people treat you.
Allycia Wolff (16:24):
Treat you.
Hm-mmmm.
Dr. Fitzsimons (16:26):
And interact with you.
Right?
And so interdependence, if westart rethinking it that way,
with quality relationships, therelationships and the quality of
those relationships matter inthe places where people live,
learn, work and play andworship.
That right there in and ofitself contributes to reversing
(16:47):
vulnerability to harm beingperpetrated.
And when harm is perpetrated,you have a network of people who
will support you and help youget through that.
Allycia Wolff (16:56):
When one shares a life with people that they get
joy from and feel supported fromand have more of like a
symbiotic relationship with,they feel more empowered to make
their own choices.
And I know that I've seen it inmy own personal life.
When I have people in my lifethat encourage me and believe in
(17:17):
me, then I am more able tofollow my dreams and to feel
supported because I know that ifI fail or something goes wrong,
I have people to reach out.
And basically that's what Nancyand I are talking about in this
whole interview.
Now the next piece that we aregoing to move into is the
conversation aboutvulnerability.
Vulnerability is something thatcomes up often in having a
(17:42):
conversation about futureplanning is the concern about
vulnerability.
And so this is just a slightlyway to think about it.
And Nancy talks a lot about howvulnerability, at the core of
it, is really power.
And she has this tool, that ifyou're interested in, you can
definitely look into, that sherefers to, it's a wheel of power
(18:05):
and control based off of acaregiver and a person receiving
care and support.
And so it's what a healthyrelationship looks like in that
power and control dynamic.
And what an unhealthyrelationship looks like.
So here is Nancy talking abouther relationship and experience
with vulnerability.
Dr. Fitzsimons (18:28):
There's this important concept of sharing
power with, not power over.
And what we need to help supportpeople in doing is developing
the power within themselves.
So we need to talk about, likeone of the self-advocates that
I've been connected to for manyyears...
(18:49):
you know, her name is Heidi.
And Heidi says,"Oh, you mean allthe, you know, the good stuff.
Yep, we need to talk about thegood stuff and the bad stuff,
not just the bad stuff." Butalso the good stuff
simultaneously so that we make astark contrast between, this is
how you deserve to be treated byother people, and this is
(19:13):
unacceptable treatment by otherpeople.
And then we have to delve intothe weeds of some of that gray
stuff.
And what I mean by that is whatI call some of the ways in which
we treat people, the dailyindignities that may not seem
harmful on the surface, but Ithink that really destroy
(19:34):
people's sense of selfdetermination.
Allycia Wolff (19:37):
What is a daily indignity?
What's an example that you couldgive?
Dr. Fitzsimons (19:41):
An example of that would be making decisions
for somebody else about everyaspect of their life.
What time they get up in themorning, what they eat for
breakfast, whether they make thebed or they don't make the bed,
you know, if they wash thedishes and when they wash the
dishes.
I mean, for some people theirlives are so controlled by what
(20:04):
other people want them to do,when they want to do that.
And to me that's an a day that'san indignity.
That's a daily indignity, whichtakes away sort of, a person's
sense of self and how they wantto live their life, what is
important to them.
And when we do that in all thelittle things, we shouldn't be
(20:26):
surprised when people aretreated in what we all would say
like, that is really hurtful,like that is abuse.
And that people don'tnecessarily really recognize
that.
They just go along thinking, youknow what, I'm just going to go
along to get along and hopefullypeople won't hurt me.
(20:47):
So we shouldn't be surprisedwhen some really horrible things
happen to people.
And we find out about it sixmonths later, a year later, two
years later, five years later,and we say, why didn't they say
something?
Well, if your entire life iscontrolled by other people in
(21:08):
all of the little tiny ways, ifpeople don't really seem to care
much about what you want or whatyou think, people don't really
have that great of expectationsof you, that you have a point of
view, then why would you assertyourself?
So if we, if we help to empowerpeople in all the little ways in
(21:32):
their life, they will have morestrength and courage to tell us
about the really bad thingsgoing on in their life.
Allycia Wolff (21:44):
Part of Brene Brown's Ted talk on
vulnerability gets to the themeof worthiness and she says that
people that are able to live ahappy and joyful life are
vulnerable to all of the goodand bad things that happen.
And what is consistent withthese people that are open to
(22:09):
being vulnerable andexperiencing the good along with
the bad, is this feeling ofworth and this feeling that I
deserve to be treated withrespect.
And you can see it is in directalignment with all the things
that Nancy and I have beentalking about through this
interview as well, is whenpeople know that they deserve to
(22:32):
be treated with respect, thenthey are inherently then less
vulnerable.
And it's, it's been reallyinteresting to me to see these
two conversations play togetherand how when people recognize
themselves as valuable worthyhumans, then they are in fact
(22:53):
safer and will live a saferlife.
And as we think overall aboutsafer future planning.
Here's a little note from Nancyabout what she tries to think
about overall in this journey.
Dr. Fitzsimons (23:12):
Yeah, I think it goes back to, I know that every
parent listening to this has thebest of intentions, right, for
their son or daughter or theirfamily member, your brother or
sister or aunt or uncle.
And I think the challenge forall of us is to just go back and
start thinking about what's theimpact.
(23:34):
And yep, sometimes you have to,I mean I think the growth and
learning, my own growth andlearning, has come from the
ability to just sort of unpackand be sort of real about all of
the things that I am sure I havedone in my 30 plus year career
that probably weren't ashelpful, maybe were even
harmful.
But there's a quote by Dr.
(23:54):
Maya Angelou that is somethinglike, I did then what I knew
then and when I knew better, Idid better.
And to me I just try to live bythat.
Like, you know, as I knowbetter, I do better.
And I think that that's just theway that I think we need to
approach this.
Music (24:18):
[ music playing]
Allycia Wolff (24:18):
If this episode inspired questions for an
advocate at The Arc, please giveus a call at 883.450.1494.
On the next episode of Focus onthe Future, I will be talking
about building community andfriendships and belonging and
ways that we as humans canconnect with other people.
(24:39):
Focused on the Future is apodcast of The Arc Minnesota.
Subscribe to the podcast on yourfavorite streaming service to
stay up to date with all thenewest episodes.
And if you feel so inclined,please leave us a review to let
us know how we're doing or anycontent that you are hoping for
in the future.
If you're enjoying listening,you can also support The Arc and
(25:00):
our mission by donating atarcminnesota.org/podcast.
Our podcast music is composedand recorded by Micah Kadwell.
Micah is a guitarist from NewBrighton, Minnesota, and he also
has autism.
Thanks, Micah.
Focus on the future is producedby Chloe Ahlf and myself and
(25:21):
engineered by Brent Nelson.
Thank you Chloe and Brent.
Have a great day everyone.
See you next time.
Music (25:30):
[ music playing]
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