ENCORE PRESENTATION: The American With Disabilities Act – Not Enough with guest Heather Markham

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Episode Transcript

(00:00):
The following is a paid podcast.iHeartRadio's hosting of this podcast constitutes neither an
endorsement of the products offered or theideas expressed. Welcome to Becoming the Journey.
This show will be a series ofconversations that will inspire listeners along their
life's journey. This show's mission isto cultivate a community of mentorship by sharing

(00:21):
our experiences in our life's journey.Nobody's journey is a straight line. So
no matter where you are in yours, this show is for you. Meet
Grace Lobray. Hi, Listeners,You're tuning in to Becoming the Journey on
WR sevent ten iHeartRadio. Today's showis about well, I'm not even sure

(00:46):
I'm going to say it's about.It's both inspiring and I think educational.
And let me tell you about myguest. So my guest is Heather Markham.
She's an engineer, assisted assistive technologyprofessional, a public speaker, a
competitive parasurfer, and Heather, I'mgoing to ask you what that is.

(01:08):
An educator, ADA architectural barriers specialist, a golfer, an award winning international
photographer. Now that might seem well, okay, fine, but let me
tell you why this is amazing becauseat the age of thirty four, Heather
received a life changing diagnosis she hadprogressive muscular dystrophy and eventually would need a

(01:36):
wheelchair. This journey of the slowdecline in mobility is chronicled in her book
Rough Waters. I know these challengesare based on your experience, Heather,
but how is it relatable to allof us? And by the way,
welcome Heather, Thank you to allof us, because I think we're all

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blindsided by challenges, and I thinkthat how you choose to approach them can
help determine how your journey goes.Do you put physical disabilities in the same
realm as mental disabilities? I meanit's the same actually okay, well not

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the same challenge. I think insome ways invisible disabilities struggles with mental health,
struggles with intellectual disabilities. I thinkthat the invisibility disabilities. And I

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know in my own case, whenmy diagote before I was diagnosed, but
while I was symptomatic, and Ibecome symptomatic in my early twenties, I
had this twelve year stretch where Iknew something was wrong, but I didn't
look like something was wrong with me, and I had a very difficult time

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getting people to believe me, andthe fact that the disability was hidden was
a lot more problematic for society todeal with, because each person I encounter
got to decide for him or heror their own selves whether they thought I

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was a truth teller or not.And so going through your life having people
think that you're just lying is verymentally challenging. And so in some ways,
when I ended up needing a wheelchairand my disability became more visible,

(03:57):
then it became easier to understand.Does that make sense? It does.
So mental illness or mental challenge,or I like to call it neuro diversity
is not as apparent as if yousee someone physical. But I want to
go back to that those twelve years. Was that not a medical profession problem?

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I mean going back, and Iwant to go back to the female
part of it, because I've heardfrom medical professionals that female illnesses or female
symptoms that they felt were always pushedaway, whereas if a male had gone

(04:42):
and they would you know, anda lot of female things were based on
male interpretations. So did you doyou now that you're looking back, do
you feel that that was one ofthe reasons why you really weren't or believed
or diagnosed. I think that thethere were there were a couple of calm

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so yes, and let me juststart with yes. I think that the
medical community tends to not believe womenas much separate completely from the muscular dystrophe.
I remember going to a just ageneral practitioner, and I said to

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him, my back is really hurting. And he said, okay, And
I said, no, like myback hurts and he said, and and
my back hurt because my abdominal muscleswere getting weak, which was a symptom
of the muscular distrophee, but nobodyknew that's what was happening. And he
said, okay. He said,well, you know, we've done a
skin check, and I promise thisall ties back together. Hold on,

(05:50):
he said, but I'm so.I'm there's just this little spot on your
forehead and I'm just gonna use someliquid nitrogen and it's gonna it's gonna stink
quite a bit, like most peoplesay, this really hurts. And I
said, fine, great, dothat. And he put this liquid nitrogen
on my forehead okay, And andI didn't flinch, and I didn't move
and he said, didn't that hurt. I said, no, that was

(06:12):
mildly uncomfortable. My back hurt.And he said, oh, your back
hurts, and I said, right, my back hurts. And so there's
this level of I think historically,male doctors have thought that women were overstated
their pain and so that and thatwe were very pain intolerant, when childbirth

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proves that, you know, asa group of you know women, child
bearing women are not pain intolerant asa matter of fact. But the I
think there's a lot of medical gaslighting that's been happening for you know,
and the systemic and it's systemic.And in my own case, because I

(06:59):
had injured my back, I wasbeing followed by workers' compensation doctors and I
had no other insurance, and sothey were looking for things, for things
directly tied to this injury. Andso even though other things were happening,
I had a doctor say, yes, look, I understand that your back
hurts, and I can currently seethat your cast muscles are wasting away,

(07:24):
not at the same rate, butI don't think they're connected. And the
reality was that they were connected,just not in a way that he was
going to be able to draw straightline by or two or three, or
connect those dots with any thing thathe understood. Do you think we've come
from that away from that, youthink we've changed. Do you think it's

(07:45):
different now if you had experience,if you were experiencing now, I mean,
that's the question, if you wereexperiencing now what you experienced back then,
do you think you would have hadthe same issues with these medical with
the medical profession, or of weat least trying harder. We are trying

(08:05):
harder. Yeah, had I that'shard. It is hopeful. I'm a
hopeful person in general. Part ofit is personalities. The doctor that I
saw very early on who told methat I should quit my job if I
hated my job so much, Ishould quit my job rather than fake an

(08:26):
injury turned out to be having alot of struggles in his own personal life
and was taking it out on me. And well, that's pleasant, right,
And that's a personality thing that youcould just run into at any point.
And another physician a year later said, I really just think you're you're

(08:48):
just making this up, and I'mgoing to tell your employer that you're fine
and this is all just in yourhead. And I broke down crying,
and he said, see, aren'tyou relieved not to live this sham of
a lie anymore? And I saidto him, no, I'm not relieved
as a matter of fact, becausethere's something very very wrong with me.
You're just not believing me. Well, I heard that like eighteen months later

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he died from a brain tumor,so it's possible that his personality was being
impacted by this brain tumor, andso there were as a whole. I
think the medical community has gotten better. I think that there's still possibilities of
running into personalities that are having thingsimpacted by forces outside of your knowledge as

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a patient. Does that make sense? So the irony in that is he's
telling you it's all in your head. Meanwhile, no one is looking at
the big picture with him that hisbehavior has become erratic and different. So
he wasn't diagnosed right either. Soyeah, it's so going through everything you've

(10:00):
gone through, and now I'm assumingyour wheelchair bound. I use a wheelchair
full time. I don't the phrasewheelchair bound for me implies that I never
leave it, and so I siton my wheelchair and I've actually gotten a

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lot of pushback from inside the communityof wheelchair users who are saying, you
know, well, don't you sitin your wheelchair? And I say no,
I sit on it like I wouldsit on any other chair, because
I leave this space and I'm notsunk down into it. I transfer onto

(10:43):
a surfboard. When I surf,I get out of my chair, off
of my chair, and I cansit on the couch if I want to.
And so I jokingly say that noone's had the guts to use duct
taper rope and strap me to mychair yet to make me actually bound to
it. And so I choose notto say wheelchair bound. And it's the

(11:07):
trick of language, right, thatphrases keep. As we evolve in understanding
language and understanding each other, wewe modify and kind of refine and howne
how it is that we speak toeach other and about each other and about
ourselves. That that makes a lotof sense. I think I agree with

(11:31):
you. I don't think if Iwas in a wheelchair that I would consider
myself bound. You're You're absolutely right, and I'm surprised that you're getting pushback
for that. Oh not the wheelchairbound. So I don't get pushed back
inside the community about wheelchair bound.I get pushed back about that I choose

(11:54):
that I sit on my wheelchair insteadof that I sit in a wheelchair.
It's kind of a really face Oh, I say, okay, sit on
instead. Okay, I get it. So, yes, you will use
a wheelchair full time and have sincetwo thousand and eight. Okay, So

(12:15):
being in the wheelchair or having toutilize it to get around and all the
challenges that you've faced and overcome some. You are a huge champion of the
fact that we've passed the ADA,which by the way, is the American

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with Americans with Disabilities Act. Andyet it's it's just a bill that doesn't
cover that we haven't pursued, thatwe haven't changed, that we haven't added
to that we and you've spoken aboutit quite a bit that we need to

(12:58):
make some changes. Do you wantto you want to talk about that a
little bit, especially independence from discrimination? Right, Well, the biggest and
and the independence discrimination is I foundon one of the national calendar of days.

(13:20):
I was just looking at a nationalcalendar of days online where they have
like National Donut Day, right,and May and May the fourth is Star
Wars day. May the Fourth bewith you? You know now, I
didn't even know that, yes,oh, yes, may the fourth,
Yes, may the force right,May the Force be with you? Made

(13:43):
the right, right, right,And so you know, they're all of
these days. While I was lookingat the calendar and saw that the anniversary
of the signing of the Americans withDisabilities Act, which is January July twenty
sixth, was labeled National Dependence DayNational Disability Independence Day, and I just

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kind of did a double take,and I was like, what am I
independent from? Like the a DAsays that I should be independent from discrimination.
That's what the signing of the Actis for. And it's about way
more than just do you have aramp? But we should start with hey,

(14:28):
do you have a ramp? Right? They're they're there the the there's
a huge problem with access still andmislabeling of things, and that there.
It drives my fiance absolutely crazy becausewe'll be going to a restaurant and as

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we drive through a parking lot,you know, he'll say, well,
you know, where's the handicapped parkingAnd I'm like, well, it's over
there, but they labeled that avan accessible spot. But it's not really
a van accessible spot. And he'slike, but so he used to ask
what and now he and now heknows that he's learned. So that the

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what I'm pointing out is that inin handicapped parking space areas, there are
skinny access aisles and wide excess aisles. Right, you've seen that, yes,
yes, so a skinny access aisleis five feet wide and a wider

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access aisle is eight feet wide,and handicapped parking spaces there is. The
law says that there is a setnumber that have to be set aside for
per per number of other parking spacesfor depending on how how many parking spaces

(16:03):
are in your parking lot, andthat at least one of them has to
be van accessible. And a vanaccessible space has an eight foot wide parking
aisle, and after you've completed theone with a van space, then your
others can have five foot access aisles. And so there, you know,

(16:29):
if we just start with parking like, there's no enforcement of just basic things
like did you even measure correctly that? And label it correctly as a space.
And there's an app I believe calledParking Mobility where you can actually report

(16:52):
parking violations and in theory you takeit, it walks you through how to
take foot was of the vehicle that'sparked without placards or hangtags or part or
an appropriate license plate, and thensend that send that information it's geotagged,

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and then it sends that information tothe local police department so that they can
enforce it. And that should includeparking on the access aisles. Well,
I was it one of my jobs. The building that we were in was
co located with the local police substation, and I went in and said,

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somebody's all over the access aisle andthey said, we can't do anything about
that. And I'm like, waitwhat, I'm just confused. And so
the the discrimination that's going on withmobility disabilities are hotel rooms and why why?
And there are all these really weird, little weird little things like for

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retail shops, okay, it saysthat you have to have access aisles that
are X wide and I don't knowthe number off the top of my head,
but enough space that you could navigatea wheelchair through unless and here's the
loophole, Unless it would reduce theamount of merchandise that you could display on

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the floor, Like well, that'sjust weird. And there is nothing in
the regulations about how to access arestaurant because I've still been sent through kitchens,
which seems like a healthcazard, likea health code violation to me.
But I don't know. Public transitisn't accessible the article that you've read.

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As of as of last year,only about twenty five percent of New York
City subway stations are fully accessible tomobility people with mobility devices. I have
twenty yes, and so I hada new replacement a couple of years ago,

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and I was traveling Long Island Railroadand the subway, and where I
got off the train, I hada walk half the length of the platform
to find an elevator. So Itotally agree with you there. Yet they're
revitalizing Penn Station and and all thesewonderful and yet you know they're they're just

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they're just not thinking. Have youheard of the new it's called the International
Board of Credentialing and Continuing Education Standards, where now it's it's required that if
you're flying that you have to fillout out of form that certifies that you

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are disabled. And if you're flyingwith a service animal, okay, you
have to submit two forms verifying theanimal is vaccinated and trained before you can
fly, and that all has tobe done beforehand. Have you heard of
that. I have not heard ofthat. One of the I had a

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service dog, and I received myservice dog in two thousand and eight,
and so my information information is basedon that and might not be up to
date. The so service animals arenow legally defined only as a dog because

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people were trying to pass off.I think there was a guy who was
trying to pass off like a peacockor a lizard or something, and it
was just ridiculous. And that's notthe same as a companion animal for your
mental health. Those are different things. Service dogs are trained to. Service

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animals are trained to do at leastthree tasks for you, and you can
and they will do those tasks oncommand. And so my dog was trained
to take off my socks, whichwas her favorite game on the planet.
And she was trained to brace.If I needed to pick up something that
was too heavy for her, Icould put one hand on her back and

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brace. And she was trained tohit the door openers, the power door
openers for me, and a wholebunch of other things. But that's all
airlines were allowed or any place wherewe were looking for access, including on
airlines. So that was all theywere allowed to ask me was tell me
three tasks that your service animals trainedfor. And so they could not ask

(22:00):
me for VET records. I well, no Northwest wanted them. This is
a very long time ago. Otherairlines did not. Some airlines, in
order to make sure that your needsare met, are asking that that you

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provide information not about your disability specifically, but about your needs related to your
disability. I'm about I'm going overseaswith my fiance at the end of the
month, at the end of theyear, and I just rebooked because the
airlines had changed. We were supposedto go from Phoenix to JFK and then

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JFK on to Madrid. And wejust got a notification that said that they
had booked us from Phoenix to Newarkand then jaf K to Madrid with a
three and a half hour window.And I called them up and I said,
no, not only no, butthere's no way on earth that we're

(23:14):
gonna get me off of this widebody last that my wheelchair is going to
get found brought to me. I'mgoing to get on it. We're going
to figure out how to get fromNewark to JFK early enough to get pre
boarded and make sure that my wheelchairmakes the flight and all of our luggage
is going to go. I said, that's an unreasonable request, and the

(23:38):
gall on the phone said, yeah, there's no way you'd ever make that.
Gee, thanks for that information,right she But she was great.
She's like, oh, yeah,absolutely not. We'll totally change that for
you. And so and she said, here's the number, here's the phone
number for our special assistant line,so that we can have it in our

(24:03):
system. How much your wheelchair ways, what the dimensions are which they want
to do so that they can makesure how to get in their cargo hold.
And that's a funny thing. Butthere's this whole passenger disability, this
passenger bill of rights that includes anairline passenger bill of Rights that includes a
whole section on disability and like tenthings that that the airlines are required to

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work with you on, including you'reentitled to know the type of aircraft that
you're flying and how big the cargodoor is, and you're entitled to help
to have access to an onboard wheelchairto access the laboratory and all of these

(24:47):
things, and so, and Iflying is challenging because I have to get
picked up twice for it, twiceto get on the and twice to get
off the plane. So I getpicked up from my wheelchair and put onto
one of those little skinny aisle chairsthat you see when you get on an

(25:08):
airplane, and then strapped to itlike Cannibal Lecter, and then dragged onto
the airplane and then picked up outoff of that and put onto the airline
seat. And each of those isan opportunity to get really injured. I
like to minimize the number of legsthat I do on a flight, Like
there's no NonStop from Phoenix to Madrid, which is okay and so, but

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I only wanted to change planes onceand not twice to get there, right.
The huge challenge is that the airlinesstill don't think it's important to take
care of our equipment. They've onlybeen required to report wheelchair damage since twenty
eighteen, and I have to tellyou that their airlines are really, really

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proud of the statistic that only onepoint five percent of wheelchairs are damaged annually,
which I mean I don't know.One point five percent sounds pretty good,
right, Yeah, but not tothe person that doesn't have access to
that wheelchair because it was damaged.Right. That's actually twenty eight wheelchairs a

(26:22):
day, or or over ten thousandwheelchairs a year, and it can take
months to actually get the damage repaired, in which case the person becomes bed
bound if they don't have a backup. And lots of people don't have backup
wheelchairs. I I do only becausewhen I when my previous wheelchair becomes it

(26:51):
becomes more costly to repair than toget a new one about every five and
a half years. And I geta new then I keep my old chair
as a backup for that exact reasonthat when a wheelchair breaks, you need
a way to be able to stillnot be stuck in bed. And I'm

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if i'm I'm either on this chairor I can only get onto other services
like a couch or somewhere else withhelp. I live alone, and so
my and my house is set upgreat for me. But so they're they're
like challenges, right, Oh,at absolutely absolutely. I'm going to ask

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you one more question, but firstI am talking with my guest Heather Markham
on my favorite radio station, wr sevent and we are kind of talking
about disabilities and what are the solutions, how how much further do we need
to take the ADA to correct thepros that still exist. So going back

(28:03):
to them, yeah, and orenforce it. You're absolutely correct. So
going back to that International Board ofCredentialing. They so they want to issue
a card for for those that aredisabled, but that card is to certify
that you're really disabled. So youknow a lot of civil rights lawyers or

(28:29):
disability rights lawyers have said that's youknow, it's it's it's really a violation
of someone's rights. But do youthink it would solve anything if if you
didn't have to continually you know,have people I mean, in your case,
it's it's it's evident, but butthere are some people I know that

(28:51):
will be put in a wheelchair justso they can or you know, come
with crutches or whatever it is,just to get on the front of a
line. Or are you know,do you think it's it is one of
the solutions to prevent that kind ofimposturing, if you want to call it.
I think that people are always goingto gain the system in a way

(29:15):
that suits them. So I thinkthat there are I I think it could
be helpful. I understand the thepotential HIPO violations, I understand the the

(29:36):
separation right that comes with I havea I have a National Disability card.
Mm hmm. But you know,would it help I don't. I don't
know. I don't know the answerfor that. I do know that there

(29:56):
are when when we're looking, andwe're looking in Europe. I know that
museums in Europe and probably here inthe States offer reduced admission fees if you
have a disability? Cool, Okay, great? What do I need in

(30:17):
order to as a non as anon European resident? What do I need
to show that I you know,so that you can write something down on
your little ledger rather than you know, she showed up in a wheelchair or
on a wheelchair. You know,what do I need to write that down?
I actually took my handicapped placard anda photo I D and that's what

(30:40):
they wrote down in their log.They actually have a the there's a disability
I D card which I'm actually gonnaapply for because it will get me free
entrance to We're also going on toParis, and so the dorsay and the

(31:02):
live and the you know, money'smoney, So it's it's nice to have
free entrance to those things. Butpeople, I live in a retirement community
and there are lots of people whohave handicapped placards that they kept after their
spouse who needed it passed away.Ah, that's what I mean by people

(31:26):
are always going to gain the systemif it's super the impostor, right,
the impostor. Now, the challengeis that you could in my own case,
when I was very you know,I so I became symptomatic at twenty
two, and so at twenty fiveyears old, I was struggling to walk

(31:48):
a long distance, and by along distance, I mean one hundred yards,
okay, So that became really challengingwhen I needed to do things like
go to the grocery store because Ineeded a park as close as possible,
and then go get a writing scooterwith a basket in the grocery store.

(32:12):
And people thought I was an impostorbecause I didn't, you know, I
didn't look sick, you know,and some days I had and I had
good days and I had bad days. And so there's the you know,
are you going to make me justifymyself every single time, you know,
but even with a handicap placard,people would look at me and say,

(32:37):
well, you don't really need that. Well, it's unfortunate that you think
you decide what I need, youknow, And that's we're judgmental. We
as human beings are judge. Arepeople who judge right. We make judgments
about everything, including what we see, and if it doesn't match our own

(32:58):
lived experience, then we think theother person to be untruthful. Right,
talk a little bit about and thisstruck me, the marriage equality. Oh
excuse me. So it's so there'sthis very strange thing that's happening, and

(33:30):
it's that. And so I letme let me start by saying that all
of the information that I'm going toprovide is stuff that I found through research
and not through my own lived experience. I have worked my entire life.
I have not been on Social Securitydisability or Social Security income now soci Security

(33:53):
income, and I'm just gonna readto you real quick out of this thing
because it's right in front of myface. Social Security income SSI is a
federal assistance program that provides monthly paymentsto adults and children. With the disability
or blindness who have income and resourcesbelow specific financial limits. So and in

(34:14):
order to receive Medicaid healthcare Medicaid healthcare, you have to be receiving SSI.
A single person with the disability isat risk for losing both their SSI and
their Medicare because the SSI benefit calculationtakes into account both their own end current

(34:37):
income and their spouses deemed income.So if I get if I have SSI
and I'm receiving seven hundred and sixtyeight dollars a month, because that's kind
of what SSI is, it's justbarely subsistence, and I get married.
Now they take my spouse's income intoa account and can reduce my SSI to

(35:01):
the point that I lose my healthinsurance. And what's really wacky about this
is that this has been talked aboutfor more than twenty years openly. In
fact, in two thousand and three, there was a policy paper that noted

(35:24):
women and this is twenty years ago, are presenting themselves as husband and wife,
but not legally married. They're justcohabitating. And someone decides that they
are living as man and wife,then they're found to be whole considered they're

(35:44):
considered married for the for SSI purposes, and the partner with the disability could
lose their benefits, could lose theirSSI income and their health insurance because so
when in the community called the marriedand decided that they were married, then
they would be reported as married,whether they were legally married or not.

(36:09):
I mean, I don't even understhe government. I don't either, because
the government is now dictating when whenthey consider you married and when they don't
consider you married, and I thinkthat's something has something has to change there.
I mean, look, let metell you something. If I didn't
walk down the island, I didn'thave a judge telling me I'm married,

(36:30):
I'm not married, done right,and no government is going to tell me
I am so. And look forsome people that don't have to be on
SSI, I mean, if theywant to be considered married. Yeah,
there's some perks there, I guess, but you know, you can't collect

(36:51):
on someone's Social Security if you're notmarried, So why would they exactly so
why would they base it that that'sa that's ridiculous and I think that's something
that needs to be changed because theydo that with young children too. If
they're you know, if you havea child that's on the spectrum or is

(37:13):
challenged in some way, you know, even though the parent gets up in
the morning and has to go towork, still have to provide for the
child, and you know, theyhave to be home certain times and they
have to and so why wouldn't thegovernment subsidize that? You know, Look,
if they're making five hundred thousand dollarsa year, I get it.

(37:34):
But you know, if you're makingthirty thousand dollars a year and you maybe
have some a little money in thebank, why I don't get it.
That's nothing today ss I actually,and in order to be on medicaid,
your financial resources can be no morethan two thousand dollars exactly, and you

(37:55):
can't make and I think you can'tmake more than eighty eight hundred dollars a
year or something like that. Yeah, the numbers are just completely wack adoodle.
And I know interabled partners or eveneven couples where both both people have
a disability or into into the weird, the weird term interabled partners. My

(38:21):
my fiancee is able bodied and soweird. And I said to him,
get ready, we're about to bean interabled partner, you know, partnership,
and he's like, that's just weird, and I'm like, I know,
I know, excuse me. Butso for for interabled couples to then

(38:44):
not be able to marry, youknow, because of because of losing health
benefits, or couples where both partnershave disabilities to not be able to marry,
you know, because they lose healthbenefits, is just it's just frustrating.

(39:05):
It's so frustrating. Why don't Ihave I thought we had equality,
I thought we had marriage equality,right, but we don't. Well,
New York City has something called domesticCertificate of domestic Partnership, and if you
have that, then you can getfrom an employer. Most employers will participate

(39:29):
in you know, the health benefitpart of it. But but you're right,
I mean, you know the majorityof young people today are not getting
married, and so you know,why why not share what we can and
what we don't have to share?We don't have to share. It's just

(39:52):
you know, things have to change. You know, we talked a little
bit before about the word in dependentokay, independent Disability Day, and I
know you also have an issue withsome of the signs I've seen recently calling
it disability pride. Month. Tellme when I first ran that by you,

(40:15):
what you said to me, becausequite frankly, even I didn't get
it, but not from you,but I didn't get the whole wording like
disability pride, Like what are youthinking? And so I'm I'm probably going
to get a lot of pushback withinthe community about this, but I'm just

(40:37):
going to go ahead and stick myfoot in it. You go, I'm
not. I am not proud ofthe fact that I have a disability.
I this and it's it's very strangeso because I acquired my disability, but

(41:01):
it's genetic, but it came onover time. Mostly I'm just halcked off
that I have a disability, whichis strange to say because I'm generally an
optimistic and hopeful and happy person.But some days I'm really frustrated about the
fact that I have a disability.And now I understand the need for the

(41:25):
group to gather and say, we'rematt as Helen, We're not going to
take it anymore. Okay, yeah, I get that. And so somebody
said, well, why don't wehave a flag? And it's fairly recent
and she made a flag. Wellthat's awesome. People are going to rally

(41:45):
around flags. I'm not going tobe one of those people because I'm just
not a person who rallies around likethat. But and so all through Disability
Pride months it, people were like, see, I'm proud of my disabled
body. Okay, that's awesome andgood, and we need to normalize what

(42:10):
it looks like to have a disabilitybecause it's just still considered abnormal. But
I mean, the entire population whodo not already have some form of disability
are one accident, one heartbeat,one brain bleed away from having a disability.

(42:37):
But you know, we all thinkwe're twenty five and indestructible, right
until we figure out that we're not. I'm an agent, you know,
agent creates disability, oh without itdown and it's sort of I don't know,
and probably if you're going to getpushed back, I'll probably get pushed

(42:57):
back too. But that's okay.I mean, the word the word proud
or pride is like, see I'mhappy. It's like saying I'm happy being
this way. No, I'm sureyou're not. Okay, No one wants
to have a disability, whether itbe mental or physical. They want to

(43:21):
lead a normal life. And Ithink the better way of saying it is
I am I am a proud survivorof dealing with the challenge of being disabled,
because really, isn't that what it'sall about is that you've come to
terms with it and that you're notgoing to say, oh poor me,

(43:46):
you know, and wallow in it, and you've gotten beyond that and you've
said, I am this is whoI am, this is what was dealt
me, and I am going tomake the best of it. I'm I'm
an adapting survivor for sure, right, and I've gone from just surviving what's

(44:07):
going on to really thriving in itand figuring out how to live the biggest,
best, bulldest life that I can, you know, while looking for
curb cuts gets me sidewalks and right. So you have a company if there's

(44:31):
a challenge to do I want todo? Yeah, I do have a
company. You want to do?Yes, you have a company. It's
call Making Waves for Good. Itwas launched in twenty eighteen, and it
kind of was an umbrella for avariety of ventures, including publishing and photographic

(44:53):
projects to help companies solve disability accessproblems that they I didn't even know they
had, although I disagree with thatmost of them do know they have them.
Can you elaborate a little bit onthat, sure. So the last
part of that is what I callada usability. And so my biggest pet

(45:19):
peeve in the world at the momentare public bathrooms in such that it's all
great if you've made an accessible stall, but if you didn't put a handle
on, a little tiny handle onthe inside of that door, now I
don't have an easy way to closeit without touching the underside of the door,

(45:40):
and that's just gross. But there'snothing in the regulations that says that
the handle has to be there,So that becomes an ada usability issue,
right And yeah, so the operableParts regulation for items placed on walls,

(46:00):
and so there are maximum reach rangeswhen you talk about if I'm gonna drive
that, if I'm going to approachit from the front, or if I'm
gonna approach it sideways, so forwardreach versus sideways reach, and then there's
obstructed like if I'm at the sink, I'm going to try and put this.
I have all these images in myown brain, but realize they're not

(46:22):
translating very well. So if youwalk up to a sink in a public
bathroom, and I'm going to rollup to the sink, so now the
sink countertop is an obstruction, andthe regulations talk about obstructed reach range.
So now I can reach not quiteas high if I have to reach past

(46:42):
something. If you put the soapdispenser on the back wall past the sink
at forty eight inches high, someonewho's standing can use it, but I
can't sitting down. And so butif you move the soap dispenser to the
wall next to the and you putit at thirty six inches high, it

(47:04):
might seem a little strange to someonewho's standing there, but still usable.
But now I can actually access it. So again ada usability versus what's code,
Because for uninstructed rechrange, the maxheight is like forty eight inches and
that's you know where you put yourhand under to get the soap. Well,

(47:25):
I don't have a chance on earthof reaching that. And so you
know, not being able to washmy hands in a public bathroom like new
and New. You're right, you'reright, and you're absolutely right. And
now in my I have visions inmy mind. I'm picturing all the airports
I've been through and all the placesI've been where you're absolutely correct, this

(47:47):
sink is and if there's a cabinetunderneath it, you can't even get your
wheelchair close enough. You know,my old school, my high school,
converted to a children's learning center,and they they took some of the bathrooms
and they've they put in lower sinksfor these young people and and toilets.

(48:14):
And if they can do that forchildren, why can't they do that?
Why can't they recognize that, Yeah, there are people in wheelchairs and you
know, they need to reach thesink, they need to reach the soap,
they need to be able to getthe wheelchair close enough. And you

(48:35):
know, we're going through all theserevisions everywhere. Why why haven't they thought
about that? I mean, it'sgreat to have a handicapped bathroom, and
it's only bigger, that's all.It is, just bigger. But if
you can't do anything bigger with it'sbigger with grab bars. And the frustration
still becomes that if we want togo somewhere, if I'm gonna so grace,

(49:00):
you and I are going to goto the same restaurant, okay,
and it needs a reservation. Soyou call and you say I'd like a
reservation and boom done. When Icall, I'm going to have to ask
is your front door accessible? Thisis the path from the where I'm going
to park to the front door accessible. Is the front door wide enough?

(49:21):
Is there going to be enough spaceto navigate my wheelchair through? Do you
have a load table that I cansit at? And is your bathroom accessible?
And by accessible, I mean isthere a stalling Is there a wheelchair
accessible stall? Are there grab bars? Is the toilet paper reachable? Can

(49:42):
I pull up underneath the sink?Can I access the soap? And can
I access the paper towel? Andthen can I get out of the door
by myself? So now, andwe're trying to go to the same place,
correct, this is ridiculous. Wewere just in Dallas and we went
to this very nice restaurant and beforewe left, I said, I said

(50:02):
to Paul, I need to usethe bathroom. And we went and there
was a door stopper that stopped thedoor from swinging fully open because of where
they had placed the sinks. Theydidn't want the door to whack the person
in the sink in the behind whilethe person was standing at the sink washing
their hands. And I was like, and I called the manager over and

(50:22):
I said, you set this upso that I can't get my powerchair through
here, even though there's a Myfiance says, there's a really nice,
gigantic wheelchair, says able stall inyour bathroom. And they're like, oh,
we didn't even think about that,right, you didn't think about it.
And the challenges is that people stillaren't thinking about it. But why

(50:44):
wouldn't it be part of the code, part of the ada. Why wouldn't
that have been part of it.I mean, it's part I don't know
who checked the box that said thatthat was okay. It was apparently they
didn't check a box, probably becausethey didn't put the box in there.
It seems it's a bit ridiculous.You're absolutely correct. You know you'd be

(51:04):
you'd be proud of me in away. So I used to have an
office at five hundred and fifth Avenue, and I know if anybody's listening from
there, probably gonna hate me.But so they redid the whole front of
the building and they didn't have ahandicapped accessible where you could hit the button
on the outside, the door wouldopen and you would be able to go

(51:25):
in. So I questioned them,and I said, how is if you're
in a wheelchair, how are yousupposed to get in? Oh, well,
you just waved to us at thefront desk, which was ridiculous because
they would have never seen you,and we'll hit the button from the inside.
And I said, well, whycouldn't you just put the button on
the outside, And they said,because it would have meant rewiring and breaking

(51:52):
through the marble, and blah blahblah blah blah. And I'm like,
I've never heard of anything like thisin my life. You expect someone to
sit out there until someone at thefront desk realizes you're out there to let
you, to let them in.I mean, this is a building on
Fifth Avenue, so you know,they think they're complying, but they're not.

(52:15):
And and yes, I'm very proudof you for bringing it up and
asking the question and saying, youknow this is this is not a reasonable
accommodation because the ADA simply says reasonableaccommodation And there is no there, there's
no part of you wave at meand I open the door. That is

(52:38):
actually a very good, reasonable accommodationbecause I should have access at the same
level as anyone else. Heather.Fortunately we have run out of time,
but I am going to leave mylisteners with the thought that you that comes
from you, and that is limitsare only in your mind and nearly anything

(53:00):
is possible with the right team,tools, help, and perseverance. Thanks
everyone for listening to this episode ofBecoming the Journey. I would love to
have you keep tuning in on WORseven ten iHeartRadio, and you can follow
us on Instagram at Becoming the Journey. Heather, thank you so much.

(53:22):
I hope anyone listening that has anykind of disability and not because we can't
predict the future, can fight forthis. Thanks Grace. I really appreciate
your time. My book is availableat Heathercmarkham dot com. Maybe you'll drop
a link in the show notes forme. That'd be great. Absolutely,

(53:43):
okay, thanks Heather, Thanks Grace. You have been listening to Becoming the
Journey, hosted by Grace Lavere.Tune in weekly to hear more conversations that
will inspire listeners along their life's journey. The proceeding was a paid podcast iHeartRadio's
hosting of this podcast constitutes neither anendorsement of the products offered or the ideas expressed.