Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
Welcome to Boundless
Abilities, a podcast brought to
you by Boundless.
Welcome everyone.
We are the largest nonprofit inOhio that provides services to
individuals with intellectualand developmental disabilities
and behavioral health challengesthrough residential support,
autism services, primary healthcare, day programs, counseling
and a whole lot more to childrenand adults.
Our mission is to build a worldthat realizes the boundless
(00:26):
potential of all people.
I'm your host, scott Light, andhey, we have a fellow podcaster
on the show today and I thinkthat's a first.
Nick Comstock of Nick Speaks ofthat Podcast.
Speaker 2 (00:39):
Nick welcome to you.
Thank you, scott.
Thank you so much for having me.
This is such a thrill for me toactually be in a podcast studio
and not through like Zoom orsomething, because that's how I
do my podcast, so this is such athrill to be here.
Speaker 1 (00:57):
Well, we're so glad
you're here and we've got a lot
to talk about, including yourpodcast, and of course, we'll
tell people where they can findthat, and we're going to talk
about that in just a little bit.
Absolutely, nick.
Let's begin this way you have acondition and the acronym is
CMV.
Would you tell our listenerswhat it is and how it affects
you?
Speaker 2 (01:15):
So CMV is called
cytomegalovirus that's a
mouthful I understand.
It was first discovered up inMinnesota in 1990.
Back then they did not have anymedications for it and my mom
(01:37):
contracted the virus when shewas pregnant with me and my twin
brother.
Before you go crazy and say,omg, you're a twin, it's not all
that's cracked up to me and I'mthe older one, the better
looking one, the smarter one, soall the above, yes.
So, and you might ask how?
(01:57):
How much are you older?
By a minute, and it's still.
I'm still older, even thoughit's 60 seconds.
Speaker 1 (02:04):
So yeah, and you rub
it in on him right All the time,
All the time.
How does CMV affect you?
Speaker 2 (02:10):
Um.
So I'm in a wheelchair 24 seven.
I'm very spastic, um, which,especially the cold weather that
we've been in this winter, hasnot helped at all.
Winter is not my friend andreally, if you're out there with
a disability and you strugglewith spasms period, you know
(02:33):
what I'm talking about.
I also have another, uh,neurological disease called
dystonia, which is where you cansee here in studio, scott, but
my hand, my left hand, my leftwrist, is curled and I also have
some of that in my neck whichcontributes to involuntary head
(02:57):
movements and stuff like that.
Speaker 1 (03:00):
Are there medicines
that help?
Speaker 2 (03:03):
Not for my spasms per
se.
My body is really weird when itcomes to medication.
My body rejects pain medication, so it doesn't really help and
there's not really.
The virus that's in me isactually dormant, so it's not
(03:26):
affecting anything right now.
I'm just dealing with the aftereffects of it, got it, got it.
Speaker 1 (03:31):
Let's do this, nick.
Let's talk in three broadbuckets, if we can.
Let's talk healthcare, let'stalk employment, and we're also
going to talk relationships.
We're going to talk dating aswell.
Let's come back to the firstone I mentioned.
Let's talk healthcare.
When you were growing up, therewasn't an emphasis on
coordinated care andmulti-agency care under one roof
(03:55):
.
We know that there is certainlyan increased effort on that now
, but how did that affect youand the medical care you
received when you were growingup?
Because everything wasdisparate at that point, very
spread out.
Speaker 2 (04:09):
Yeah, so my mom and
my family were my primary
caregivers for the first almost30 years of my life, so I didn't
start receiving home healthcare until the year of 2012.
And so it's been about a decadenow, maybe 12 years or so, so
(04:31):
I've had the good, the bad andthe really, really ugly as far
as home health care concerns.
Speaker 1 (04:38):
Nick, we also talked
when we had a pre-recording
phone call, zoom call.
Actually, we talked about theservices cliff and you know this
well.
For young people, especiallyonce they turn 18, 19, 20 years
old and maybe leave high schoolor maybe a school after high
school, there is a cliff and theservices just drop off.
(05:01):
Is that improving at all?
Speaker 2 (05:03):
So I've spent a lot
of time in my bedroom alone with
a TV, phone and computer and Itell special needs parents all
the time you have to have a planfor your special needs child
after they graduate school,Because a lot of times that is
(05:24):
their social, that is their timethat they spend with friends,
and once that's over and theirfriends who aren't disabled go
to college or something, theyhave nothing.
And then parents just throw uptheir hands a lot of times and
they're like I don't know whatto do.
So what I tell parents is youhave to plan your special needs
(05:46):
child's next chapter just as youwould your non-special needs
child.
It may look very different, butyou still have to plan it
because otherwise your kid'sgoing to struggle with a lot of
depression, a lot of resentmentas a why aren't they getting to
do a lot of the same things thattheir brothers and sisters do?
Speaker 1 (06:10):
How challenging is
coordinated care for you these
days.
Speaker 2 (06:15):
Well, thankfully I
have a really good provider that
I started with in August oflast year named Rekindle Living.
They're a relatively new agencyand they started in the
pandemic and I give any businessa prop that started in the
(06:37):
middle of the pandemic, sothey're just really wonderful.
I have automatic transportationto anywhere I need to go.
They were able to help me gethere today, so they're just
fantastic.
Speaker 1 (06:53):
And Boundless is
helping as well, right.
Speaker 2 (06:55):
With the counseling
services.
Speaker 1 (06:57):
yes, and that's
helpful so far.
Speaker 2 (06:59):
Yeah, Right now we've
done, I think as of this
recording, about 14 sessions andI'm getting to know my
counselor, Garrett, who iswonderful and really takes time
to listen to me and try tofigure things out.
So that's going well.
(07:20):
And if you're not in therapy intoday's world and you think you
would be looked at as crazy ifyou went into therapy, trust me
you wouldn't.
And if you really sat down longenough to try to think, if you
really do need therapy, youprobably do.
Speaker 1 (07:37):
Well, and the brain
is the most complicated organ we
have in the body and it's noteven close.
And therapy is a sign ofstrength?
Yes, it is, it absolutely is.
Let's talk about employment,and I've got a statistic here.
I knew you were coming on.
I knew a fellow podcaster, so Ihad to raise my game here, nick
.
Yeah, according to the Bureauof Labor Statistics, in 2023, a
(08:01):
little over 22% of people with adisability were employed, and
that is actually the highestnumber since data was first
collected in 2008.
But still, unemployment ratesare much higher for people with
a disability, and that's acrossall educational groups.
Can you talk about yourchallenges with employment?
Speaker 2 (08:21):
Absolutely, and when
I read that statistic before
coming on this podcast, my jawjust dropped, because a lot of
people think that you know, youhave the ADA, you have all these
things put into place forpeople with disabilities, and
the ADA is 35 years old now andyou would think that something
(08:45):
like the ADA, with having thatin place, that the employment
rate for people withdisabilities would be much
higher.
Unfortunately, it's not, and somy experience has been that
I've had two states and threedifferent counties tell me that
I'm unemployable simply justbecause of my disability.
(09:09):
So yeah, I've just had a lot ofissue with that.
Speaker 1 (09:13):
Nick, let me ask you
about this Again.
According to the federalgovernment, people with a
disability were more likely tofind part-time work than
full-time.
Has that been any easier foryou?
Speaker 2 (09:23):
Finding part-time
work?
No, volunteer work Maybe, butthat's something I've really,
really had to dig for and Ihaven't had much volunteer work
here in the state of Ohio, theonly thing that I have had in
another county.
I was a part of their humanrights committee for four years
(09:47):
and they paid me like a $25stipend to come do their human
rights committee every month,but that's about as close as
I've gotten to being employed.
Speaker 1 (09:59):
Okay, let's talk
about your podcast.
Speaker 2 (10:01):
What's it about?
Employed?
Okay, let's talk about yourpodcast.
What's it about?
So my podcast is called NickSpeaks, the podcast dedicated to
the disabled community, wherewe speak up, speak out and speak
loud about the issues thatmatter to the disabled the most.
I came up with this idea lastAugust.
I was actually um doing acareer discovery or career
(10:27):
exploration through OOD, whichstands for Ohioans without for
opportunities with disabilities.
I may have just butchered that,but we have too many D's and
OOs and all that stuff, so um,but yeah, so I found them, o's
and all that stuff, so um, butyeah, so I found them.
(10:47):
I found my podcast coach,actually, kyle goodnight,
through um career exploration.
And if you don't know what clearcareer exploration is, it's
where you're assigned a casemanager.
They sit down with you and theyfigure out what you would like
to do and then they try to gofind people that are in that
field that you can talk to, andso when we did that I believe it
(11:11):
was about a 90 day stand whenwe did that everybody that I
talked to.
Cause I want to be an actor, Iwant to be a public speaker,
I've done some speeches at theOhio state house, um, so I want
to expand all that, and so, whenwe did all the career
exploration, everybody said Nick, you have to do a podcast, this
(11:33):
is what you have.
This is the new thing.
Now, this is where a lot ofpeople are getting their
information.
So that's where we came up with.
Kyle and I started workingtogether back in August probably
a little bit before that and weare 26 episodes and, as of this
recording, we'll probably beabout near almost near 30.
(11:56):
But yeah, it's been a lot offun.
Speaker 1 (11:59):
That's awesome, and
most podcast series don't make
it past episode four, so thefact that you're pushing 30,
nick, that is huge, man yeah.
Speaker 2 (12:10):
Yeah, and I plan to
go as long as I can go.
I.
You can find it on ApplePodcasts, spotify.
You can also watch it on myYouTube channel at Nicholas
Comstock, which the spelling forNicholas is a little different.
I don't spell it with an H.
It's spelled N-I-C-O-L-A-S,comstock, c-o-m-s-t-o-c-k.
(12:35):
Or you can just type in NickSpeaks, n-i-c-k Speaks, and
it'll come up on your Apple,spotify or my YouTube channel.
Speaker 1 (12:45):
It's a good podcast
too.
I enjoyed listening to a coupleof episodes before you came to
our podcast.
Let me bring up that thirdtopic that I mentioned earlier
relationships and dating.
Oh Lord, got to keep it G-rated, nick.
Now, we've covered these topicson other episodes here, and
it's always eminentlyfascinating, not only for us,
(13:06):
but for our listeners too.
All right, nick, so broadquestion How's your dating life?
Speaker 2 (13:11):
I have none right now
, unfortunately.
So if anybody's out there, thatis.
As long as they're not funnierthan me Anybody out there, that
is.
As long as they're not funnierthan me, we're good as long as
they're not funny.
No, I think if I found acomedian, I think we could go on
the road together.
I love to be funny.
(13:31):
They have to be compassionate.
My faith is very important tome, so that would be a factor.
And as long as they can cook, Ican't say that enough because
you know, in home health carethere's a shortage of good cooks
.
Oh, interesting.
Speaker 1 (13:48):
Okay, yeah, okay.
What are the challenges todating, to building
interpersonal relationships forthose in the IDD world?
Speaker 2 (13:58):
Well, I think it's
because and I think we were
going to talk a lot about this alittle bit about this too is
that people with disabilitiesreally struggle to get out, and
that's because of lack oftransportation.
So, you know, if we couldreally work on that as a society
(14:19):
, as if transportation could bemade more readily available and
we don't have to schedule it 30days in advance, as opposed to
maybe if we could schedule it 30minutes in advance, then I
think that would open up moreoptions for us as those with IDD
(14:41):
and developmental disabilities.
I think that would open up moreoptions for us not just to have
more options as a datingrelationship, but just, as you
know, to be able to go to arestaurant when we're when we
want to.
Speaker 1 (14:57):
Sure.
So yeah, you've also got someadvice out there for people who
may encounter a relationshipscam.
Speaker 2 (15:05):
Yes, First of all,
don't send money, because I've
done.
I've done that a time or two.
Don't send money.
I don't care what story theytell you.
You know if they're low ontheir heart medication, say you
know, God love you, I pray foryou, but I'm not sending $150 so
(15:30):
you can get your pills refilled.
I don't know you.
And be very careful about thesethree words I love you.
I know, especially with someonewith a disability that
struggled hearing those wordsgrowing up, those words, if you
hear them from another personwho invests time in you, whether
(15:53):
that be, they just talk to youfor 30 minutes and you've never
had that before.
So you want to be very careful.
Speaker 1 (16:02):
Can you also talk
about the importance of
relationships, whether it's afriend, a partner, a spouse it
can be anyone, but just theimportance of relationships,
especially for those with adisability, because you hit on
something else that's importantearlier and that is there's
isolation, especially withpeople with IDD.
(16:23):
Talk about the importance ofthese relationships.
Speaker 2 (16:25):
Yeah, and I would
even go back a little bit
further as far as the dating.
Just because we're disableddoes not mean that we're going
to want to automatically datesomeone in that particular group
.
And I would say, people withdisabilities tend to find
ourselves in a bubble, becauseyou have special education, you
(16:48):
have the special Olympics, soand I think a lot of the reasons
able-bodied people strugglehaving relationships with people
that are disabled is becausewe're not around each other
enough.
There's the Special Olympics,there's special education.
(17:10):
Yes, we need those things, butwe also need to integrate more
with people who aren't disabledso we can the both of us can get
a taste of both worlds.
Speaker 1 (17:23):
So, nick, if we've
got a listener or listeners, an
organization or corporationthat's listening to this podcast
and they haven't quite made thejump to maybe volunteer or get
involved with IDD communitiesout there, what's your pitch to
get them to jump in?
Speaker 2 (17:41):
Well, one of the
things that people with
disabilities crave, which we'vetalked about in the last few
minutes, is relationships groupof people who love us hard, who
(18:06):
love us passionately and whodoesn't have that wall up of
emotion.
I can't speak for all peoplewith disabilities, but I can
speak for myself.
I am someone who lovespassionately and who loves hard.
So if you're looking for agroup of people who want to jump
in and volunteer in yourorganization or have a paid
(18:30):
position, there's not a group ofpeople that I believe that
really want to work harder andcontribute to their community
than the disabled.
So if you want to get involvedwith the disabled community, I
would say for the state of Ohio,contact your local county board
(18:50):
.
We have 88 of them.
Contact your local county board, see if you can get in with the
service coordination branch ofyour county board and say what
can my organization do to bemore involved with the people in
this organization?
Speaker 1 (19:12):
Nick, thanks for
being here.
Speaker 2 (19:13):
Absolutely.
Speaker 1 (19:14):
This has been a whole
lot of fun and again remind our
viewers one more time wherethey can find your podcast.
Speaker 2 (19:19):
So the Nick Speaks
podcast can be found at Apple
Podcasts, Spotify, YouTube, andyou can also email me at Nick
Speaks Official N-I-C-K SpeaksOfficial at gmailcom.
Speaker 1 (19:35):
All right, nick, come
back anytime, okay.
Speaker 2 (19:38):
Absolutely.
Speaker 1 (19:39):
All right To our
listeners.
Thank you as well.
Don't forget you can be part ofepisodes to come.
Email us your questions orcomments at podcast at
iamboundlessorg.
This is Boundless Abilitiesbrought to you by Boundless.
Thank you.