June 19, 2024 • 37 mins
Discover the transformative journey of Carolee Morano, who shifted from a successful 14-year career in international banking to becoming a passionate advocate for people with developmental disabilities, In this episode, we discuss the Atlantic Center for Independent Living and the Mental Health Association in Atlantic County’s Civic Action Engagement Initiative and how people with disabilities can become more involved in the community.
The Civic Action Engagement Initiative is funded by the NJ Division of Disability Services (DDS), New Jersey Department of Human Services (DHS)
Links
1. https://www.mhaac.info/ubw-how-to-join.html
2. https://inclusivehealthycommunities.org/
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:17):
hello everybody and welcome to another edition of
the atlantic silk podcast.
I'm here with one of my newfriends that I met this year,
carolee and Carolee, how do yousay your last name?
Morano Morano, carolee, morano.
And before you know, as we gotinto Know and Share, we found
out we had a lot in common.
(00:37):
We both came from theindependent living, the IL,
backgrounds.
So, carolee, let's jump rightinto it.
How did you get involved inindependent living and
disability advocacy?
Speaker 2 (00:49):
Okay.
So after a 14-year career ininternational banking, I had my
daughter and I became an at-homemom for the first six years of
her life and I wound upvolunteering for an organization
, a nonprofit, that did servicesfor women and children
(01:11):
primarily, and I fell in lovewith nonprofit mission work and
then I reached a point where Iwas looking to be employed
full-time, and my firstfull-time job in human services
was with an organization thatserved people with developmental
(01:33):
disabilities, and I was therefor eight years, expand my own
understanding and experiences ofthe needs, issues, barriers,
challenges, rights you know,everything to do with people who
had developmental disabilitiesand many of them had multiple
(01:56):
disabilities and who were livingin group homes.
So there were issues of, youknow, access, transportation,
all of the issues that wetypically associate with
disabilities in general.
And then I it became time forme to move on and I found my way
into the SIL world.
(02:16):
I was working for can I say thename of the SIL, dawn?
Yes, you can, you can.
Okay, I was working for DawnCenter for Independent Living
and I will tell you it was awonderful job.
I had an amazing boss, carmelaSlavinsky, who is amazing yes,
she is and I became theindependent living supervisor.
(02:42):
So for the IO program,independent living supervisor,
so for the IL program.
I attended meetings with theNew Jersey SILs.
I got to know the SIL community, completely fell in love, was
absolutely fascinated about thehistory and in fact I was
indoctrinated immediately with awonderful presentation where I
(03:05):
got to hear Ed Roberts speak andsee all of the history of the
Sill movement and I really beganto deeply appreciate the civil
rights issues among people withdisabilities.
And again, that was a wonderfulstint and I did wind up changing
(03:27):
employment.
It really had to do with familyand personal circumstances.
I needed to be someplace closerto home and I wound up again at
an organization, a very bigorganization that serves people
with developmental disabilities,also youth in the foster care
system.
So I continued thatdisabilities work.
One of the cornerstones of mywork throughout this career has
(03:51):
been grant writing, but I alsoand I've been involved in
administrative functions likeevents and development things,
event planning and marketingcommunications.
You know that aspect of thebusiness which gave me an
insight into some of thegovernment issues as well.
Speaker 1 (04:13):
Yes, that's awesome, and you know we love the Dawn
Center.
And how long were?
Speaker 2 (04:18):
you at Dawn.
How many years I was there.
Almost five years, wow, and youwere also in international
banking.
Speaker 1 (04:23):
I didn't know that.
Five years, wow, and you werealso in international banking.
I didn't know that 14 years.
Speaker 2 (04:27):
Yes.
I started as a clerk typist andleft, as it was a very it was a
$4 billion organization.
I left as one of many, manyassistant vice presidents, but
like.
I said, I came in in my earlytwenties as a clerk typist and
you had a very rewarding careerand that career has helped me
greatly in nonprofit, becausethere's not a tremendous amount
(04:50):
of financial expertise in in ingeneral I'm not every
organization so I have been ableto bring that to to my work,
especially in grants anddevelopment, which is the money.
Speaker 1 (05:03):
Yes, which is important because you can't do
any of the work withoutunderstanding the money, as we
talk about on my podcast all thetime.
And now you're with thewonderful Mental Health
Association in Atlantic Countyand we are working on the
Inclusive Healthy CommunitiesGrant, which many of my
listeners have heard aboutbefore and where we're doing
(05:27):
advocacy and teaching peopleadvocate how to do advocacy work
.
So talk about that.
How did you get connected tothe mental health association
and how are you enjoying uh,this grant?
Speaker 2 (05:38):
work well.
Well, it's amazing and I'm justgonna say you know, my
connection was I had beenreceiving services.
I had been ill for some time.
I became unable to work, so Ileft my career in disability
services much sooner than Ithought.
I was ill for some time.
(05:59):
I began to recover, but in themeantime I had been receiving
services from the organization,and the services that were that
I was most engaged in while Iwas not well were there UBW,
united by Wellness Groups, whichis which now I'm.
I am facilitating some groups,and that includes groups for the
(06:25):
Inclusive Health Communitiessorry Civic Action and
Engagement Program.
So that's how I got involvedthere and that's been wonderful.
And I you know I am this I'venever worked or been involved
with a Rutgers grant.
I don't think I've ever made aRutgers grant application, which
(06:46):
is kind of funny since I'vewritten about 250 grants.
But you know I am sort of awareof some of their work in
wanting to fund community healthsolutions and you know.
So it's very much an honor tobe doing this work and to find
out that I would be doing itwith a cell and have connection
(07:08):
back into the cell world, whichis a very, very unique niche
services.
Um, it's been.
It's been wonderful.
And to, to my great joy, thepeople who are coming to the
groups are engaging.
Speaker 1 (07:23):
All right, yeah so let's talk about that.
So we are really trying to inour grant, get more people with
disabilities involved in civicengagement and we're teaching
them advocacy skills and how toget involved in democracy, how
our government works.
So really talk about you know,just briefly, people ask us all
(07:43):
the time how do I get involvedin advocacy?
And, as somebody who's done alot of this work, what would you
tell them?
What would you say to them?
Speaker 2 (07:52):
I would say that many of the amenities that we enjoy
now, that people take forgranted, did not exist without
advocacy.
That people take for granteddid not exist without advocacy
In the disability world.
You know, in the early 1800s,you know it just there was no
(08:16):
understanding In the UnitedStates.
There was just no understandingabout disability and, to be
very honest, I think peopledidn't really think of people
with disabilities as people inthe same way that we think of
other people.
And it was an enormously hardroad of hard fought advocacy and
you know so.
Those are the people who camebefore and made us possible,
(08:38):
made it possible for us to bewhere we are today, and yet
there is so much undone.
So we need advocates, by thesame token, being engaged in the
community, even if you're notengaged with advocacy per se.
But maybe you want to be partof a coalition that helps keep
(08:58):
the streets clean.
It could be as simple as thatbeautifying parks.
It doesn't necessarilynecessarily civic engagement,
doesn't necessarily have to bepolitical or advocacy or any of
that, but the idea of beingengaged in the community is
certainly an important aspect towellness, um and so so being
(09:21):
able to encourage people, tomake new connections and maybe
do a little volunteering andlearn things about themselves
that they didn't know is, youknow, I think, very important
and, like I said, I'm surprised.
A couple of the people who arein these groups I know from
other groups and I'm justheartwar warmed and surprised to
(09:44):
see them engage, you know so.
So I have high hopes.
Speaker 1 (09:51):
Yeah, and it's important to know I will put the
information of link to Unitedby Wellness.
Anybody across the state or evenacross the country can join
these workshops in these groups.
So if you're hearing about this,I know my podcast, I have had
people from Alabama hear mypodcast so I know people can be
like, oh, I'm not in New Jersey,but if you're interested in
(10:11):
this topic, you know it'sdefinitely worth coming.
And you know, I think what yousaid is really key because I
think sometimes when selves talkabout advocacy or when
organizations like the MentalHealth Association talk about
advocacy, people right away goto like political and a lot of
people may not be comfortablewith that, but like civic
engagement could be attending apride rally or starting a book
(10:34):
group or you know it doesn'thave to be, you know, calling
your congressman, not thatthat's not a great thing to do,
it just doesn't if you'reoverwhelmed by this discussion,
it doesn't have to be that.
And I love what Caroline saidabout and she started this
podcast by talking about thehistory and really the history
of independent living and it'sall about advocacy and people
(10:57):
getting involved.
So talk about that.
Talk a little about the historyif you don't mind about where
it stuck out to you and why itwas so engaging.
Speaker 2 (11:06):
So I'm going to start by saying that to my
fascination, going from, youknow, having worked in the SIL
world and now working in themental health world.
There are two separate advocacyhistories and I'll just make a
comment that I am very happy tosee people both with physical
and invisible disabilitiesstarting to come together to
(11:29):
increase their power.
So with the disabilitieshistory, you know, people didn't
even understand that peoplewith disabilities are people
with abilities who have a rightto access everything that
anybody in the community canaccess and that's a
(11:52):
constitutional right and thatwas a hard-fought right and
disabilities rights.
It was part of the civil rightsmovement but it sort of got
excluded and it wasn't until the1990s, when the ADA was passed,
that we finally had reallegislation with Keith not too
(12:13):
sharp, unfortunately, thathappens with a lot of laws but
to really make sure that therights of people with
disabilities were protected.
And one of the things that I afilm, it was a PBS production I
believe and I'm Lives thatMatter I'm trying to Is it Lives
Worth Living and I'm lives thatmatter I'm trying to.
Is it lives worth living, livesworth living.
(12:34):
And it really drove home theidea that many misinformed or
uninformed people in thecommunity did not even consider
that people with disabilitiessaw themselves as people who
were alive and had a life tolive and and had aspirations.
And this film just it reallydrove that home.
(12:56):
You know I already had been inthe field and developing a deep
understanding of that and reallyappreciating that.
But there was a scene in thefilm where there were protests
arranged and people were settingaside their kings and their
wheelchairs and crawling up theWhite House steps and it was a
very visceral visualdemonstration we don't even have
(13:21):
access to our government partof a movement that raises
awareness to give people whodeserve and intrinsically have
the same rights as anybody elseand to make sure that those
rights are recognized andhonored and that people with
(13:44):
disabilities are not excluded.
Speaker 1 (13:47):
Right, that's a great movie you reference.
Also, another one is Crip Camp.
That has a lot of the greathistory that's in Netflix, so it
encouraged everyone to learnabout this stuff.
And you're right, the historyreally does capture you and it
really does.
It can really make you justtotally engrossed in this work
(14:07):
because you understand the hardwork that was done and the
groundwork that was laid and thesuccess that was had.
The groundwork that was laidand the success that was had
because you know the the idea ofeven us having this discussion
on a platform like zoom isprogress, you know yes if you
know the history and know the uh, know the stigma that used to
(14:29):
be associated.
That is still out there, but Iwould argue that there's been
tremendous progress from peoplein this award is, even though
there's tons of work to be doneand what do you think some of
that work to be done is carolyn,what would you tell people?
I know it's hard to think aboutbecause there's so much, but
what would you?
What would you?
What would you tell people ifyou can give them an idea?
Speaker 2 (14:52):
well, I, I, I would tell, and I actually, in my work
, have been telling people thatwe all have a spectrum of
abilities and they're alldifferent and whether you have a
physical disability or aninvisible disability or not, we
all have strengths andweaknesses and I think you know
(15:14):
one of the things is to makepeople understand that people
with any kind of disability canbe a very valuable asset to the
employment community and to, ingeneral, the community in some
form of engagement, asvolunteers, in some form of
engagement as volunteers, justjust as people to be friends
(15:35):
with and to meet people in inyour churches or synagogues,
whatever it might be that youknow, every, every person brings
value to a situation and Iwould want especially people
with disabilities to know that,because often stigma there's
(15:56):
also self-stigma and the productof external stigma, and I want
people to find their worth andemployers to understand that
some of those unique abilitiesthey've been statistically
proven.
People with disabilities tend tohave greater longevity, stay in
(16:16):
their jobs longer.
Unfortunately, that comes froma special gratitude for being
given the chance to work, whichthey should have had the right
to in the first place, and alsoI think people with disabilities
are amazing problem solversbecause they've had to figure
out how to get around in a worldthat does not accommodate them
(16:38):
at every turn.
Speaker 1 (16:40):
Yeah, I think those are great points and really that
getting over that ableism,which means disability and
discrimination, and theinternalized ableism that I
think every person with any typeof disability goes through just
learning that there's nothingwrong with them and that it's
society that needs to change,and that, of course, they have,
(17:06):
you know, to do their part too,and to live their lives the way
they choose too, to live theirlives the way they choose to.
But it's, you know, I'm readinga book, I'm listening to a book
now called Disability Pride andthey talk about that process of
sometimes you know wanting tohide your disability and you
know not being fully comfortablewith it yet if you can't hide
(17:26):
it, so you really have to learn,as a person with a disability,
to overcome those things, whichis totally unfair because nobody
else without a disability hasto do that.
But it's about learning,teaching people, I think,
society that disability is apart of the human process and
it's a part of human nature andthere's nothing wrong with it.
Which is why I always use theword disability I don't like
(17:48):
words like differently abled oranything like that because
disability is just a naturalpart of life.
I mean, if you live long enough, you're gonna have some form of
disability eventually.
So I always say you should beinvested in this, not only for
moral reasons, but for strategiclife reasons as well as well
not just yourself.
Speaker 2 (18:08):
It could be, you know , and not that we wish this on
anybody, but it could be, youknow, and not that we wish this
on anybody, but it could be yourmother, your father, your
spouse, your best friend, yourchild.
Disability there are provenstatistics about this as well,
and a high, high, highpercentage of the population
will experience disability, atleast for a period, and some,
(18:33):
when they hit that point ofexperiences, are not going to
turn back.
It will become a permanentdisability.
So it does affect us all and itdoes behoove us to understand
that, so that we don't suddenlyfeel reduced when this very
natural phenomenon happens.
I've come to the conclusionthat anything that happens in
nature is natural.
(18:54):
Yes, anything that happens innature is natural.
By definition, it's ano-brainer.
Speaker 1 (18:59):
Yes, yeah, exactly, and you know, and 25% of the
population has a disability.
You know if somebody you loveor you is going to have an
experience with disability inyour lifetime, so it's just so
important.
And now I'm going to jump toreally talking to our decision
makers and our elected leadersand I know you have experience
(19:20):
with that and, of course, peoplewith disabilities.
We want more to become thosedecision makers and elected
leaders and that's the purposeof our grants in the long term.
So talk about that, becausesome people with disabilities
are so intimidated by that.
Talk about your experience withthat and sort of how to go
about.
I know I always bring upcalling a congressman, but you
(19:41):
know people do think about that.
How do I even talk to mydecision maker that can have
some effect on a policy that I'mconcerned about.
Speaker 2 (19:52):
Well, there are definitely a set of skills that
make being involved in speakingto a legislator whether it's
your, you know.
So there's a basic set ofskills, but there's also almost
(20:19):
like a formula to how to get andkeep a legislator or public
officials attention, becausethey have a zillion people who
want to speak to them aboutthings that they're passionate
about every day.
So some of the skills thatwe've been teaching under the
CAEI project, civic Action andEngagement Initiative, are those
(20:44):
wide ranges of skills.
You have to have a littleunderstanding of how government
works.
You have to have a littleunderstanding of how to do
research to follow a bill thatmight that's being considered to
be passed as law.
It might be as simple as youknow what to wear if you're
(21:04):
meeting with a legislator.
Even on zoom, you know youmight not see what's on the
bottom.
but you know the top should lookthe way you look, yes and um, I
mean even just engagement andeye contact.
But also you know how to findyour legislator, how to write a
letter to your legislator.
And I really think right now ina couple of our groups under
(21:29):
this initiative, we've beentalking about storytelling,
which in the business world theycall it the elevator speech.
Storytelling which in thebusiness world they call it the
elevator speech, but it'sgetting what you want to say
down to three to five minutes,because at that point the
legislator is done.
So this is a difficult thingbecause we have stories and we
(21:52):
have things that we'repassionate about changing
because we've been hurt by thesystem, and you know.
So we want to tell our stories,we want to tell the whole story
so that they understand.
But that formula does not workto get your foot in the door, to
get the legislators' attention.
So that's a very important partof what we teach also, and you
(22:16):
know, also just helping peoplefind local coalitions, local
community meetings, anythingthat they might want to get
engaged with in the community.
We will help them find thoseconnections and teach them how
to find them for themselves aswell.
Speaker 1 (22:33):
Yeah, because that's a hard part too, and I think you
really articulated it reallywell about how it's
understandable that, as a personwith a disability, you want to
tell your whole story, frombeginning to end, because you
think all the details areimportant and not that they're
not important, but honestly,most legislators and most humans
do not have that long ofattention spans.
(22:54):
So you really want to get toyour point quickly, tell your
story and then again you reallywant to end it with what you're
started and end it with whatyou're asking for, because
legislators a lot of times dowant to help and decision makers
a lot of times do want to help,but they don't like that
feeling of when they're justbeing, you know, the kind that
told something but not really aclear idea of what they can do
(23:19):
to make it better or have someimpact.
Speaker 2 (23:21):
So that's true.
That is very important becausemany of us may feel that when we
go in and tell our stories,they'll figure out what to do.
And the reality is they'redealing with thousands, maybe
tens and twenties of thousandsof real issues that people have
(23:41):
heartfelt concerns about andwhose lives are impacted, and
maybe, you know, in a verynegative way.
So they don't know every nuanceof the existing laws.
They don't necessarily.
They certainly don't know everynuance of every issue.
So you are actually bringingthat to them and because there
are thousands, you have to be ina position where you're keeping
(24:06):
their attention for that shorttime they have and getting that
point across by saying you knowwhat at the end you're
explaining.
For example, I'll use affordablehousing as an example, because
we've been doing that so often.
Disability, although it canrelate, but you know we need
more.
I have a, I have a growndaughter with three young
(24:29):
children.
She's a single mom.
She is having trouble findingaffordable housing.
We need more.
There are weighing lists, etcetera, et cetera.
So that's the story.
But what we really want and wemay not even know this initially
when we're developing our storytelling for a legislator what
we really want is for them toask to support a 15% increase in
(24:53):
the county budget foraffordable housing, for example.
Correct, so that's the thing isto identify something tangible
that you can ask for.
That will help the situationand before you even start your
speech, you know that's whatyou're getting to, because, in
the end, that's what thelegislator is going to pay
(25:14):
attention to.
Is this something he could sinkhis teeth into?
Speaker 1 (25:17):
Right right, right right, because they want to.
They want to, so you want toconnect to them with your story,
but then they want to knowagain what they want you to do
with it.
So do you want them to support?
You know?
Speaker 2 (25:28):
there's a housing development.
Speaker 1 (25:30):
That's coming up for a vote.
Please vote for it.
What do you want them to do is,I think, a really important
part, and you know we're also.
We just finished a workshopabout the importance of building
relationships and talk aboutthat because I know that some of
our listeners and some of ourpeople in the disability world
(25:53):
and I understand this may bekind of disillusioned with the
process and the political anddecision-making process process
and the political anddecision-making process.
So it can be very easy to gointo these rooms and not want to
get really frustrated with yourlegislator and to not really
want to build thoserelationships with the people
who make decisions and also theother people in the community,
but talk about the importance ofthat.
That you need to.
You know also know when to bediplomatic and to bring people
(26:17):
to your side, even if youdisagree with them on some
things.
Speaker 2 (26:20):
Absolutely.
These are people who can helpand often you might have some
differences, but who you mightengage on a common ground, who
have the power to make change.
And so these are your allies.
They may not be your bestfriends, but they can be very
important allies in realizingthese things that will make your
(26:45):
life and the life of people whohave experienced the barriers
you have better and, I think, aperfect example to drive home
the idea that what you do todayyou might not see the results,
you might not even see it, butthe conversations start as seeds
and the fact that there wastremendous advocacy and
(27:11):
protesting and all kinds ofcivic actions that were taking
place back in the 60s for therights for people with
disabilities.
Those seeds were planted.
They did not see the resultsuntil, finally, the early 1990s,
or actually the late 90s Iforget the year.
Speaker 1 (27:31):
Early yep 1890s.
Speaker 2 (27:34):
Yeah, you're right.
So that's an example, and someof those people who were there,
maybe 50 years old, back in the60s, maybe they weren't even
here anymore when finally thatlaw got passed.
And we know that law isn'tperfect, so the work isn't done,
but everything you do is apotential seed.
You can't give up.
If people had given up in the60s because it didn't happen by
(27:58):
the 70s, you could not have thatlegislation today.
Speaker 1 (28:02):
Yeah, and that's exactly right, and that's true
for any successful piece oflegislation that has benefited
people.
It takes decades, and decadesand decades and you can't you
know you can get frustrated, butit's important not to give up
and not to see your work asuseless.
And one of our participants diduse that phrase planting seeds.
I mean, you can get verydisillusioned, but you're
(28:23):
planting seeds and you know, ifyou're advocating for more
affordable and accessiblehousing for people with
disabilities in yourneighborhood, for example, and
you're going to get pushbackbecause they're going to be,
what about traffic?
They can't afford this.
But those people are members ofthe community too, so you're
going to find a way to work withthem and to turn a lot of your
(28:46):
opponents into allies, and thereis a way to do that, and there
is even a way to.
Somebody can stay your opponent, but you establish a working
relationship with them and theyrespect you.
And maybe they disagree withyou about housing, but they are
all for you know more accessiblebeach access and you find a way
(29:09):
to work on that issue with theminstead.
So you know, just always bekind to people.
It doesn't mean you can't bestrong and have your your, make
your point, but buildingrelationships is essential and
and, um, I know we're going totalk about this, uh, later in
our workshops, but really talkabout and this work can be
(29:32):
exhausting talk about theimportance of self-care.
You touched on mental healthand I think that's a good way to
kind of end our discussion.
Is, you know, people can getvery, you know, disenchanted and
disheartened by this work, sogive people some tips on how to
keep going.
Speaker 2 (29:50):
So, just like people can have physical disabilities
that is the word that we usepeople can have invisible
disabilities.
Obviously, mental health is oneof them.
But all people have health,whether physical health, mental
health, emotional health.
All people have health and inthe mental health community
(30:12):
there's a concept of the eightdimensions of wellness.
I actually brought it into acurricula for the SIL that I was
working at, because they're notreally separated.
In order to have whole wellness, we need to have our best
wellness in mind body and spirit.
So that means that self-carebecomes extremely important and
(30:37):
you know it can be difficult todo this, especially in a world
that treats that has thisconcept of special needs, as
though someone who is in aworkplace and might need some
downtime because stresses arehigh I mean, everybody has that.
They take days off, they takevacations.
It's not different for a personwith disabilities.
(30:59):
So we have to understand thatwe're not, that we should not be
ashamed to ask for what we needand to take what we need and to
know when.
You know when we've pushedourselves too far in the mental
health community.
One of you know, one of thethings that has emerged as a
(31:20):
tool in a movement is somethingcalled a RAP plan, a wellness,
recovery and action plan, and inthat plan you very basically
identify what do I look like andsound like and do when I'm well
, what?
What are the signs?
How does that change when Imight be sliding or sinking or
(31:41):
not doing well, and then, andthen you write down what are the
steps I need to take at thatpoint?
And then there's a, you know, acrisis plan that, if it does
emerge to a crisis level, whatshould should be happening, what
you want, what you want in yourlife, if you are not able to
articulate at that point in timewhat your wishes are.
(32:03):
So it's like a, it's a plan andfrankly, I think everybody
should have one, not just peoplewith a mental health or any
other disability.
We all need to know when we arehaving the signs of pushing
over the limit and need to keepourselves well, because that's
the only way we get to keepdoing what we do.
Speaker 1 (32:24):
Yeah, I think bringing up WRAP Wellness Action
Recovery Plan is a great idea.
And send me some information.
I'll put that in the link.
I'll put some so people canlook into that.
Because you're right, peopleneed to really do what they can
and take care of themselves, andI know it's easier said than
done.
And you know we've really beenthrough a lot as a society in
(32:46):
recent years of the pandemic,like I always think about the
trauma we just casually all wentthrough and lived our lives and
you know there's stilllingering effects of that and
you know, being with adisability, it can be even
tougher.
And I love what you said abouthow we need to.
The term special needs drivesme, triggers me in a lot of ways
(33:11):
, because we're not asking foranything special.
We're not asking for anythingthat any other human doesn't
need.
By the way, taking breaks isgood because it helps you be
more productive.
Like you know this wholeconcept that you need to go and,
go and go until you'rephysically and mentally drained
and ill.
I see us getting away from thissociety, but we need to
(33:32):
continue to get away from itbecause it's not healthy and
it's also not productive.
So I think that was a great wayto close it.
We're going to end here andthank you so much, carolee.
If you have anything else youwant to promote or say, please
wrap us up here.
And this was a great discussion.
(33:52):
I'm so glad you found theMental Health Association.
I was so happy when I heard youwork there because I'm like, oh
, another cell person.
It's a good bridge for theproject.
Well, you know, it's just sucha.
Like you said, cell servicesare so different than all other
disability services and it issuch a great group of people we
(34:18):
have here.
Speaker 2 (34:19):
Carmela used to call the Sills the best kept secret,
because people don't hear aboutthem.
There's not enough funding forthem, so there's not a lot tons
of money to go around putting upbillboards and you know
whatever.
So now we're going to get offinto a thing.
Speaker 1 (34:34):
Um, I always say now we're gonna get off into a thing
.
I always say I love ed roberts,but I would probably rename.
Would rename this because thename is sometimes confusing.
People think we're assistedliving or yes, people live here
and nobody lives at your cell.
We're resource centers.
Speaker 2 (34:51):
So you know, the cells are actually about how to
get people out of living in anindependent life with whatever
sports they need in thecommunity.
So there is that I.
I won't call it a misnomer, butI'll say it's.
It might be somewhat misleadingbecause yes it's confusing that
(35:12):
residential thing will makeyour center.
Speaker 1 (35:16):
Yep.
So, like I said, if you haveany other thoughts, please wrap
us up and then we'll.
I will see you at our next IHCmeeting and if anybody wants to
come, we're going to haveinformation in the link.
I won't give the dates andtimes because I don't want them
to be on this episode, and thenwe change it, so please just
(35:37):
follow the links.
Speaker 2 (35:38):
So the last thing I wanted to add is that idea that
I hope that each one of us findsa way to find our self-stigma
and cure that.
And an example I want to giveis everybody does have workplace
accommodations.
People don't necessarilyrecognize that, but if I was
(36:01):
four foot nine and I was workingin a grocery store and I had to
stock a top shelf, I would needhelp.
I would need an accommodation.
I would need my employer tounderstand that I can't stock
the shelves.
So I need an accommodation thatI team up with another employee
and maybe I do a piece of theirjob instead, because they have
(36:21):
to do this piece of what wouldhave been my job otherwise.
So we're all just like everyoneelse and don't let anybody else
ever make you think otherwise.
Speaker 1 (36:32):
Yeah, and that's a great point.
And I'll just end by saying Ithink one of the most
frustrating parts of having anytype of disability is that when
you ask for help, it can turn oh, they need help.
It turns into a thing.
But people without disabilitiesget help and ask for help all
the time and you help them andthey help you.
But yet when you have adisability, and sometimes it
(36:53):
gets turned into like, oh, likeI said, it goes back to that
this is a special need and thisis something different.
So we really need to again getaway from that and just
understand that we're allconnected and that disability is
just a part of life.
So thank you all for joining us.
Thank you, caroline, for agreat episode of the Atlantic
City Atlantic Seal podcast.
(37:13):
I didn't change the name, Ipromise.
Thank you everybody.
Goodbye, thank you, bye-bye,bye-bye.
hello everybody and welcome to another edition of
the atlantic silk podcast.
I'm here with one of my newfriends that I met this year,
carolee and Carolee, how do yousay your last name?
Morano Morano, carolee, morano.
And before you know, as we gotinto Know and Share, we found
out we had a lot in common.
(00:37):
We both came from theindependent living, the IL,
backgrounds.
So, carolee, let's jump rightinto it.
How did you get involved inindependent living and
disability advocacy?
Speaker 2 (00:49):
Okay.
So after a 14-year career ininternational banking, I had my
daughter and I became an at-homemom for the first six years of
her life and I wound upvolunteering for an organization
, a nonprofit, that did servicesfor women and children
(01:11):
primarily, and I fell in lovewith nonprofit mission work and
then I reached a point where Iwas looking to be employed
full-time, and my firstfull-time job in human services
was with an organization thatserved people with developmental
(01:33):
disabilities, and I was therefor eight years, expand my own
understanding and experiences ofthe needs, issues, barriers,
challenges, rights you know,everything to do with people who
had developmental disabilitiesand many of them had multiple
(01:56):
disabilities and who were livingin group homes.
So there were issues of, youknow, access, transportation,
all of the issues that wetypically associate with
disabilities in general.
And then I it became time forme to move on and I found my way
into the SIL world.
(02:16):
I was working for can I say thename of the SIL, dawn?
Yes, you can, you can.
Okay, I was working for DawnCenter for Independent Living
and I will tell you it was awonderful job.
I had an amazing boss, carmelaSlavinsky, who is amazing yes,
she is and I became theindependent living supervisor.
(02:42):
So for the IO program,independent living supervisor,
so for the IL program.
I attended meetings with theNew Jersey SILs.
I got to know the SIL community, completely fell in love, was
absolutely fascinated about thehistory and in fact I was
indoctrinated immediately with awonderful presentation where I
(03:05):
got to hear Ed Roberts speak andsee all of the history of the
Sill movement and I really beganto deeply appreciate the civil
rights issues among people withdisabilities.
And again, that was a wonderfulstint and I did wind up changing
(03:27):
employment.
It really had to do with familyand personal circumstances.
I needed to be someplace closerto home and I wound up again at
an organization, a very bigorganization that serves people
with developmental disabilities,also youth in the foster care
system.
So I continued thatdisabilities work.
One of the cornerstones of mywork throughout this career has
(03:51):
been grant writing, but I alsoand I've been involved in
administrative functions likeevents and development things,
event planning and marketingcommunications.
You know that aspect of thebusiness which gave me an
insight into some of thegovernment issues as well.
Speaker 1 (04:13):
Yes, that's awesome, and you know we love the Dawn
Center.
And how long were?
Speaker 2 (04:18):
you at Dawn.
How many years I was there.
Almost five years, wow, and youwere also in international
banking.
Speaker 1 (04:23):
I didn't know that.
Five years, wow, and you werealso in international banking.
I didn't know that 14 years.
Speaker 2 (04:27):
Yes.
I started as a clerk typist andleft, as it was a very it was a
$4 billion organization.
I left as one of many, manyassistant vice presidents, but
like.
I said, I came in in my earlytwenties as a clerk typist and
you had a very rewarding careerand that career has helped me
greatly in nonprofit, becausethere's not a tremendous amount
(04:50):
of financial expertise in in ingeneral I'm not every
organization so I have been ableto bring that to to my work,
especially in grants anddevelopment, which is the money.
Speaker 1 (05:03):
Yes, which is important because you can't do
any of the work withoutunderstanding the money, as we
talk about on my podcast all thetime.
And now you're with thewonderful Mental Health
Association in Atlantic Countyand we are working on the
Inclusive Healthy CommunitiesGrant, which many of my
listeners have heard aboutbefore and where we're doing
(05:27):
advocacy and teaching peopleadvocate how to do advocacy work
.
So talk about that.
How did you get connected tothe mental health association
and how are you enjoying uh,this grant?
Speaker 2 (05:38):
work well.
Well, it's amazing and I'm justgonna say you know, my
connection was I had beenreceiving services.
I had been ill for some time.
I became unable to work, so Ileft my career in disability
services much sooner than Ithought.
I was ill for some time.
(05:59):
I began to recover, but in themeantime I had been receiving
services from the organization,and the services that were that
I was most engaged in while Iwas not well were there UBW,
united by Wellness Groups, whichis which now I'm.
I am facilitating some groups,and that includes groups for the
(06:25):
Inclusive Health Communitiessorry Civic Action and
Engagement Program.
So that's how I got involvedthere and that's been wonderful.
And I you know I am this I'venever worked or been involved
with a Rutgers grant.
I don't think I've ever made aRutgers grant application, which
(06:46):
is kind of funny since I'vewritten about 250 grants.
But you know I am sort of awareof some of their work in
wanting to fund community healthsolutions and you know.
So it's very much an honor tobe doing this work and to find
out that I would be doing itwith a cell and have connection
(07:08):
back into the cell world, whichis a very, very unique niche
services.
Um, it's been.
It's been wonderful.
And to, to my great joy, thepeople who are coming to the
groups are engaging.
Speaker 1 (07:23):
All right, yeah so let's talk about that.
So we are really trying to inour grant, get more people with
disabilities involved in civicengagement and we're teaching
them advocacy skills and how toget involved in democracy, how
our government works.
So really talk about you know,just briefly, people ask us all
(07:43):
the time how do I get involvedin advocacy?
And, as somebody who's done alot of this work, what would you
tell them?
What would you say to them?
Speaker 2 (07:52):
I would say that many of the amenities that we enjoy
now, that people take forgranted, did not exist without
advocacy.
That people take for granteddid not exist without advocacy
In the disability world.
You know, in the early 1800s,you know it just there was no
(08:16):
understanding In the UnitedStates.
There was just no understandingabout disability and, to be
very honest, I think peopledidn't really think of people
with disabilities as people inthe same way that we think of
other people.
And it was an enormously hardroad of hard fought advocacy and
you know so.
Those are the people who camebefore and made us possible,
(08:38):
made it possible for us to bewhere we are today, and yet
there is so much undone.
So we need advocates, by thesame token, being engaged in the
community, even if you're notengaged with advocacy per se.
But maybe you want to be partof a coalition that helps keep
(08:58):
the streets clean.
It could be as simple as thatbeautifying parks.
It doesn't necessarilynecessarily civic engagement,
doesn't necessarily have to bepolitical or advocacy or any of
that, but the idea of beingengaged in the community is
certainly an important aspect towellness, um and so so being
(09:21):
able to encourage people, tomake new connections and maybe
do a little volunteering andlearn things about themselves
that they didn't know is, youknow, I think, very important
and, like I said, I'm surprised.
A couple of the people who arein these groups I know from
other groups and I'm justheartwar warmed and surprised to
(09:44):
see them engage, you know so.
So I have high hopes.
Speaker 1 (09:51):
Yeah, and it's important to know I will put the
information of link to Unitedby Wellness.
Anybody across the state or evenacross the country can join
these workshops in these groups.
So if you're hearing about this,I know my podcast, I have had
people from Alabama hear mypodcast so I know people can be
like, oh, I'm not in New Jersey,but if you're interested in
(10:11):
this topic, you know it'sdefinitely worth coming.
And you know, I think what yousaid is really key because I
think sometimes when selves talkabout advocacy or when
organizations like the MentalHealth Association talk about
advocacy, people right away goto like political and a lot of
people may not be comfortablewith that, but like civic
engagement could be attending apride rally or starting a book
(10:34):
group or you know it doesn'thave to be, you know, calling
your congressman, not thatthat's not a great thing to do,
it just doesn't if you'reoverwhelmed by this discussion,
it doesn't have to be that.
And I love what Caroline saidabout and she started this
podcast by talking about thehistory and really the history
of independent living and it'sall about advocacy and people
(10:57):
getting involved.
So talk about that.
Talk a little about the historyif you don't mind about where
it stuck out to you and why itwas so engaging.
Speaker 2 (11:06):
So I'm going to start by saying that to my
fascination, going from, youknow, having worked in the SIL
world and now working in themental health world.
There are two separate advocacyhistories and I'll just make a
comment that I am very happy tosee people both with physical
and invisible disabilitiesstarting to come together to
(11:29):
increase their power.
So with the disabilitieshistory, you know, people didn't
even understand that peoplewith disabilities are people
with abilities who have a rightto access everything that
anybody in the community canaccess and that's a
(11:52):
constitutional right and thatwas a hard-fought right and
disabilities rights.
It was part of the civil rightsmovement but it sort of got
excluded and it wasn't until the1990s, when the ADA was passed,
that we finally had reallegislation with Keith not too
(12:13):
sharp, unfortunately, thathappens with a lot of laws but
to really make sure that therights of people with
disabilities were protected.
And one of the things that I afilm, it was a PBS production I
believe and I'm Lives thatMatter I'm trying to Is it Lives
Worth Living and I'm lives thatmatter I'm trying to.
Is it lives worth living, livesworth living.
(12:34):
And it really drove home theidea that many misinformed or
uninformed people in thecommunity did not even consider
that people with disabilitiessaw themselves as people who
were alive and had a life tolive and and had aspirations.
And this film just it reallydrove that home.
(12:56):
You know I already had been inthe field and developing a deep
understanding of that and reallyappreciating that.
But there was a scene in thefilm where there were protests
arranged and people were settingaside their kings and their
wheelchairs and crawling up theWhite House steps and it was a
very visceral visualdemonstration we don't even have
(13:21):
access to our government partof a movement that raises
awareness to give people whodeserve and intrinsically have
the same rights as anybody elseand to make sure that those
rights are recognized andhonored and that people with
(13:44):
disabilities are not excluded.
Speaker 1 (13:47):
Right, that's a great movie you reference.
Also, another one is Crip Camp.
That has a lot of the greathistory that's in Netflix, so it
encouraged everyone to learnabout this stuff.
And you're right, the historyreally does capture you and it
really does.
It can really make you justtotally engrossed in this work
(14:07):
because you understand the hardwork that was done and the
groundwork that was laid and thesuccess that was had.
The groundwork that was laidand the success that was had
because you know the the idea ofeven us having this discussion
on a platform like zoom isprogress, you know yes if you
know the history and know the uh, know the stigma that used to
(14:29):
be associated.
That is still out there, but Iwould argue that there's been
tremendous progress from peoplein this award is, even though
there's tons of work to be doneand what do you think some of
that work to be done is carolyn,what would you tell people?
I know it's hard to think aboutbecause there's so much, but
what would you?
What would you?
What would you tell people ifyou can give them an idea?
Speaker 2 (14:52):
well, I, I, I would tell, and I actually, in my work
, have been telling people thatwe all have a spectrum of
abilities and they're alldifferent and whether you have a
physical disability or aninvisible disability or not, we
all have strengths andweaknesses and I think you know
(15:14):
one of the things is to makepeople understand that people
with any kind of disability canbe a very valuable asset to the
employment community and to, ingeneral, the community in some
form of engagement, asvolunteers, in some form of
engagement as volunteers, justjust as people to be friends
(15:35):
with and to meet people in inyour churches or synagogues,
whatever it might be that youknow, every, every person brings
value to a situation and Iwould want especially people
with disabilities to know that,because often stigma there's
(15:56):
also self-stigma and the productof external stigma, and I want
people to find their worth andemployers to understand that
some of those unique abilitiesthey've been statistically
proven.
People with disabilities tend tohave greater longevity, stay in
(16:16):
their jobs longer.
Unfortunately, that comes froma special gratitude for being
given the chance to work, whichthey should have had the right
to in the first place, and alsoI think people with disabilities
are amazing problem solversbecause they've had to figure
out how to get around in a worldthat does not accommodate them
(16:38):
at every turn.
Speaker 1 (16:40):
Yeah, I think those are great points and really that
getting over that ableism,which means disability and
discrimination, and theinternalized ableism that I
think every person with any typeof disability goes through just
learning that there's nothingwrong with them and that it's
society that needs to change,and that, of course, they have,
(17:06):
you know, to do their part too,and to live their lives the way
they choose too, to live theirlives the way they choose to.
But it's, you know, I'm readinga book, I'm listening to a book
now called Disability Pride andthey talk about that process of
sometimes you know wanting tohide your disability and you
know not being fully comfortablewith it yet if you can't hide
(17:26):
it, so you really have to learn,as a person with a disability,
to overcome those things, whichis totally unfair because nobody
else without a disability hasto do that.
But it's about learning,teaching people, I think,
society that disability is apart of the human process and
it's a part of human nature andthere's nothing wrong with it.
Which is why I always use theword disability I don't like
(17:48):
words like differently abled oranything like that because
disability is just a naturalpart of life.
I mean, if you live long enough, you're gonna have some form of
disability eventually.
So I always say you should beinvested in this, not only for
moral reasons, but for strategiclife reasons as well as well
not just yourself.
Speaker 2 (18:08):
It could be, you know , and not that we wish this on
anybody, but it could be, youknow, and not that we wish this
on anybody, but it could be yourmother, your father, your
spouse, your best friend, yourchild.
Disability there are provenstatistics about this as well,
and a high, high, highpercentage of the population
will experience disability, atleast for a period, and some,
(18:33):
when they hit that point ofexperiences, are not going to
turn back.
It will become a permanentdisability.
So it does affect us all and itdoes behoove us to understand
that, so that we don't suddenlyfeel reduced when this very
natural phenomenon happens.
I've come to the conclusionthat anything that happens in
nature is natural.
(18:54):
Yes, anything that happens innature is natural.
By definition, it's ano-brainer.
Speaker 1 (18:59):
Yes, yeah, exactly, and you know, and 25% of the
population has a disability.
You know if somebody you loveor you is going to have an
experience with disability inyour lifetime, so it's just so
important.
And now I'm going to jump toreally talking to our decision
makers and our elected leadersand I know you have experience
(19:20):
with that and, of course, peoplewith disabilities.
We want more to become thosedecision makers and elected
leaders and that's the purposeof our grants in the long term.
So talk about that, becausesome people with disabilities
are so intimidated by that.
Talk about your experience withthat and sort of how to go
about.
I know I always bring upcalling a congressman, but you
(19:41):
know people do think about that.
How do I even talk to mydecision maker that can have
some effect on a policy that I'mconcerned about.
Speaker 2 (19:52):
Well, there are definitely a set of skills that
make being involved in speakingto a legislator whether it's
your, you know.
So there's a basic set ofskills, but there's also almost
(20:19):
like a formula to how to get andkeep a legislator or public
officials attention, becausethey have a zillion people who
want to speak to them aboutthings that they're passionate
about every day.
So some of the skills thatwe've been teaching under the
CAEI project, civic Action andEngagement Initiative, are those
(20:44):
wide ranges of skills.
You have to have a littleunderstanding of how government
works.
You have to have a littleunderstanding of how to do
research to follow a bill thatmight that's being considered to
be passed as law.
It might be as simple as youknow what to wear if you're
(21:04):
meeting with a legislator.
Even on zoom, you know youmight not see what's on the
bottom.
but you know the top should lookthe way you look, yes and um, I
mean even just engagement andeye contact.
But also you know how to findyour legislator, how to write a
letter to your legislator.
And I really think right now ina couple of our groups under
(21:29):
this initiative, we've beentalking about storytelling,
which in the business world theycall it the elevator speech.
Storytelling which in thebusiness world they call it the
elevator speech, but it'sgetting what you want to say
down to three to five minutes,because at that point the
legislator is done.
So this is a difficult thingbecause we have stories and we
(21:52):
have things that we'repassionate about changing
because we've been hurt by thesystem, and you know.
So we want to tell our stories,we want to tell the whole story
so that they understand.
But that formula does not workto get your foot in the door, to
get the legislators' attention.
So that's a very important partof what we teach also, and you
(22:16):
know, also just helping peoplefind local coalitions, local
community meetings, anythingthat they might want to get
engaged with in the community.
We will help them find thoseconnections and teach them how
to find them for themselves aswell.
Speaker 1 (22:33):
Yeah, because that's a hard part too, and I think you
really articulated it reallywell about how it's
understandable that, as a personwith a disability, you want to
tell your whole story, frombeginning to end, because you
think all the details areimportant and not that they're
not important, but honestly,most legislators and most humans
do not have that long ofattention spans.
(22:54):
So you really want to get toyour point quickly, tell your
story and then again you reallywant to end it with what you're
started and end it with whatyou're asking for, because
legislators a lot of times dowant to help and decision makers
a lot of times do want to help,but they don't like that
feeling of when they're justbeing, you know, the kind that
told something but not really aclear idea of what they can do
(23:19):
to make it better or have someimpact.
Speaker 2 (23:21):
So that's true.
That is very important becausemany of us may feel that when we
go in and tell our stories,they'll figure out what to do.
And the reality is they'redealing with thousands, maybe
tens and twenties of thousandsof real issues that people have
(23:41):
heartfelt concerns about andwhose lives are impacted, and
maybe, you know, in a verynegative way.
So they don't know every nuanceof the existing laws.
They don't necessarily.
They certainly don't know everynuance of every issue.
So you are actually bringingthat to them and because there
are thousands, you have to be ina position where you're keeping
(24:06):
their attention for that shorttime they have and getting that
point across by saying you knowwhat at the end you're
explaining.
For example, I'll use affordablehousing as an example, because
we've been doing that so often.
Disability, although it canrelate, but you know we need
more.
I have a, I have a growndaughter with three young
(24:29):
children.
She's a single mom.
She is having trouble findingaffordable housing.
We need more.
There are weighing lists, etcetera, et cetera.
So that's the story.
But what we really want and wemay not even know this initially
when we're developing our storytelling for a legislator what
we really want is for them toask to support a 15% increase in
(24:53):
the county budget foraffordable housing, for example.
Correct, so that's the thing isto identify something tangible
that you can ask for.
That will help the situationand before you even start your
speech, you know that's whatyou're getting to, because, in
the end, that's what thelegislator is going to pay
(25:14):
attention to.
Is this something he could sinkhis teeth into?
Speaker 1 (25:17):
Right right, right right, because they want to.
They want to, so you want toconnect to them with your story,
but then they want to knowagain what they want you to do
with it.
So do you want them to support?
You know?
Speaker 2 (25:28):
there's a housing development.
Speaker 1 (25:30):
That's coming up for a vote.
Please vote for it.
What do you want them to do is,I think, a really important
part, and you know we're also.
We just finished a workshopabout the importance of building
relationships and talk aboutthat because I know that some of
our listeners and some of ourpeople in the disability world
(25:53):
and I understand this may bekind of disillusioned with the
process and the political anddecision-making process process
and the political anddecision-making process.
So it can be very easy to gointo these rooms and not want to
get really frustrated with yourlegislator and to not really
want to build thoserelationships with the people
who make decisions and also theother people in the community,
but talk about the importance ofthat.
That you need to.
You know also know when to bediplomatic and to bring people
(26:17):
to your side, even if youdisagree with them on some
things.
Speaker 2 (26:20):
Absolutely.
These are people who can helpand often you might have some
differences, but who you mightengage on a common ground, who
have the power to make change.
And so these are your allies.
They may not be your bestfriends, but they can be very
important allies in realizingthese things that will make your
(26:45):
life and the life of people whohave experienced the barriers
you have better and, I think, aperfect example to drive home
the idea that what you do todayyou might not see the results,
you might not even see it, butthe conversations start as seeds
and the fact that there wastremendous advocacy and
(27:11):
protesting and all kinds ofcivic actions that were taking
place back in the 60s for therights for people with
disabilities.
Those seeds were planted.
They did not see the resultsuntil, finally, the early 1990s,
or actually the late 90s Iforget the year.
Speaker 1 (27:31):
Early yep 1890s.
Speaker 2 (27:34):
Yeah, you're right.
So that's an example, and someof those people who were there,
maybe 50 years old, back in the60s, maybe they weren't even
here anymore when finally thatlaw got passed.
And we know that law isn'tperfect, so the work isn't done,
but everything you do is apotential seed.
You can't give up.
If people had given up in the60s because it didn't happen by
(27:58):
the 70s, you could not have thatlegislation today.
Speaker 1 (28:02):
Yeah, and that's exactly right, and that's true
for any successful piece oflegislation that has benefited
people.
It takes decades, and decadesand decades and you can't you
know you can get frustrated, butit's important not to give up
and not to see your work asuseless.
And one of our participants diduse that phrase planting seeds.
I mean, you can get verydisillusioned, but you're
(28:23):
planting seeds and you know, ifyou're advocating for more
affordable and accessiblehousing for people with
disabilities in yourneighborhood, for example, and
you're going to get pushbackbecause they're going to be,
what about traffic?
They can't afford this.
But those people are members ofthe community too, so you're
going to find a way to work withthem and to turn a lot of your
(28:46):
opponents into allies, and thereis a way to do that, and there
is even a way to.
Somebody can stay your opponent, but you establish a working
relationship with them and theyrespect you.
And maybe they disagree withyou about housing, but they are
all for you know more accessiblebeach access and you find a way
(29:09):
to work on that issue with theminstead.
So you know, just always bekind to people.
It doesn't mean you can't bestrong and have your your, make
your point, but buildingrelationships is essential and
and, um, I know we're going totalk about this, uh, later in
our workshops, but really talkabout and this work can be
(29:32):
exhausting talk about theimportance of self-care.
You touched on mental healthand I think that's a good way to
kind of end our discussion.
Is, you know, people can getvery, you know, disenchanted and
disheartened by this work, sogive people some tips on how to
keep going.
Speaker 2 (29:50):
So, just like people can have physical disabilities
that is the word that we usepeople can have invisible
disabilities.
Obviously, mental health is oneof them.
But all people have health,whether physical health, mental
health, emotional health.
All people have health and inthe mental health community
(30:12):
there's a concept of the eightdimensions of wellness.
I actually brought it into acurricula for the SIL that I was
working at, because they're notreally separated.
In order to have whole wellness, we need to have our best
wellness in mind body and spirit.
So that means that self-carebecomes extremely important and
(30:37):
you know it can be difficult todo this, especially in a world
that treats that has thisconcept of special needs, as
though someone who is in aworkplace and might need some
downtime because stresses arehigh I mean, everybody has that.
They take days off, they takevacations.
It's not different for a personwith disabilities.
(30:59):
So we have to understand thatwe're not, that we should not be
ashamed to ask for what we needand to take what we need and to
know when.
You know when we've pushedourselves too far in the mental
health community.
One of you know, one of thethings that has emerged as a
(31:20):
tool in a movement is somethingcalled a RAP plan, a wellness,
recovery and action plan, and inthat plan you very basically
identify what do I look like andsound like and do when I'm well
, what?
What are the signs?
How does that change when Imight be sliding or sinking or
(31:41):
not doing well, and then, andthen you write down what are the
steps I need to take at thatpoint?
And then there's a, you know, acrisis plan that, if it does
emerge to a crisis level, whatshould should be happening, what
you want, what you want in yourlife, if you are not able to
articulate at that point in timewhat your wishes are.
(32:03):
So it's like a, it's a plan andfrankly, I think everybody
should have one, not just peoplewith a mental health or any
other disability.
We all need to know when we arehaving the signs of pushing
over the limit and need to keepourselves well, because that's
the only way we get to keepdoing what we do.
Speaker 1 (32:24):
Yeah, I think bringing up WRAP Wellness Action
Recovery Plan is a great idea.
And send me some information.
I'll put that in the link.
I'll put some so people canlook into that.
Because you're right, peopleneed to really do what they can
and take care of themselves, andI know it's easier said than
done.
And you know we've really beenthrough a lot as a society in
(32:46):
recent years of the pandemic,like I always think about the
trauma we just casually all wentthrough and lived our lives and
you know there's stilllingering effects of that and
you know, being with adisability, it can be even
tougher.
And I love what you said abouthow we need to.
The term special needs drivesme, triggers me in a lot of ways
(33:11):
, because we're not asking foranything special.
We're not asking for anythingthat any other human doesn't
need.
By the way, taking breaks isgood because it helps you be
more productive.
Like you know this wholeconcept that you need to go and,
go and go until you'rephysically and mentally drained
and ill.
I see us getting away from thissociety, but we need to
(33:32):
continue to get away from itbecause it's not healthy and
it's also not productive.
So I think that was a great wayto close it.
We're going to end here andthank you so much, carolee.
If you have anything else youwant to promote or say, please
wrap us up here.
And this was a great discussion.
(33:52):
I'm so glad you found theMental Health Association.
I was so happy when I heard youwork there because I'm like, oh
, another cell person.
It's a good bridge for theproject.
Well, you know, it's just sucha.
Like you said, cell servicesare so different than all other
disability services and it issuch a great group of people we
(34:18):
have here.
Speaker 2 (34:19):
Carmela used to call the Sills the best kept secret,
because people don't hear aboutthem.
There's not enough funding forthem, so there's not a lot tons
of money to go around putting upbillboards and you know
whatever.
So now we're going to get offinto a thing.
Speaker 1 (34:34):
Um, I always say now we're gonna get off into a thing
.
I always say I love ed roberts,but I would probably rename.
Would rename this because thename is sometimes confusing.
People think we're assistedliving or yes, people live here
and nobody lives at your cell.
We're resource centers.
Speaker 2 (34:51):
So you know, the cells are actually about how to
get people out of living in anindependent life with whatever
sports they need in thecommunity.
So there is that I.
I won't call it a misnomer, butI'll say it's.
It might be somewhat misleadingbecause yes it's confusing that
(35:12):
residential thing will makeyour center.
Speaker 1 (35:16):
Yep.
So, like I said, if you haveany other thoughts, please wrap
us up and then we'll.
I will see you at our next IHCmeeting and if anybody wants to
come, we're going to haveinformation in the link.
I won't give the dates andtimes because I don't want them
to be on this episode, and thenwe change it, so please just
(35:37):
follow the links.
Speaker 2 (35:38):
So the last thing I wanted to add is that idea that
I hope that each one of us findsa way to find our self-stigma
and cure that.
And an example I want to giveis everybody does have workplace
accommodations.
People don't necessarilyrecognize that, but if I was
(36:01):
four foot nine and I was workingin a grocery store and I had to
stock a top shelf, I would needhelp.
I would need an accommodation.
I would need my employer tounderstand that I can't stock
the shelves.
So I need an accommodation thatI team up with another employee
and maybe I do a piece of theirjob instead, because they have
(36:21):
to do this piece of what wouldhave been my job otherwise.
So we're all just like everyoneelse and don't let anybody else
ever make you think otherwise.
Speaker 1 (36:32):
Yeah, and that's a great point.
And I'll just end by saying Ithink one of the most
frustrating parts of having anytype of disability is that when
you ask for help, it can turn oh, they need help.
It turns into a thing.
But people without disabilitiesget help and ask for help all
the time and you help them andthey help you.
But yet when you have adisability, and sometimes it
(36:53):
gets turned into like, oh, likeI said, it goes back to that
this is a special need and thisis something different.
So we really need to again getaway from that and just
understand that we're allconnected and that disability is
just a part of life.
So thank you all for joining us.
Thank you, caroline, for agreat episode of the Atlantic
City Atlantic Seal podcast.
(37:13):
I didn't change the name, Ipromise.
Thank you everybody.
Goodbye, thank you, bye-bye,bye-bye.
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