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,Yeah, you're tuning in to Becoming the
Journey on WR seven ten iHeartRadio.Today's show is about well, I'm not

(00:46):
even sure. I'm going to sayit's about. It's both inspiring and I
think educational. And let me tellyou about my guests. So my guest
is Heather Markham. She's an engineer, assisted assistive technology professional, a public
speaker, a competitive parassurfer, andHeather, I'm going to ask you what

(01:07):
that is. An educator, aDA architectural barriers specialist, a golfer,
an award winning international photographer. Nowthat might seem well, okay, fine,
but let me tell you why thisis amazing because at the age of
thirty four, Heather received a lifechanging diagnosis. She had progressive muscular dystrophy

(01:34):
and eventually would need a wheelchair.This journey of the slow decline immobility is
chronicled in her book Rough Waters.I know these challenges are based on your
experience, Heather, but how isit relatable to all of us? And
by the way, welcome Heather,Thank you. Relatable to all of us

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because I think we're all blindsided bychallenges and I think that how you choose
to approach them can help determine howyour journey goes. Do you put physical

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disabilities in the same realm as mentaldisabilities? Actually, okay, well,
okay, not the same challenge.I think in some ways invisible disabilities struggles

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with mental health, struggles with intellectualdisabilities. I think that the invisibility disabilities.
And I know in my own casewhen my diagnote before I was diagnosed,
but while I was symptomatic, andI became symptomatic in my early twenties,

(03:01):
I had this twelve year stretch whereI knew something was wrong, but
I didn't look like something was wrongwith me, and I had a very
difficult time getting people to believe me, and the fact that the disability was
hidden was a lot more problematic forsociety to deal with, because each person

(03:29):
I encounter got to decide for himor her or their own selves whether they
thought I was a truth teller ornot. And so going through your life
having people think that you're just lyingis very mentally challenging. And so in
some ways, when I ended upneeding a wheelchair and my disability became more

(03:54):
visible than it became easier to understand. Does that make sense? It does.
So mental illness or mental challenge,or I like to call it neurodiversity
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 therewere there were a couple of calm so

(05:05):
yes, and let me just startwith yes. I think that the medical
community tends to not believe women asmuch separate completely from the muscular distrophe.
I remember going to a just ageneral practitioner and I said to him,

(05:29):
my back is really hurting. Andhe said, okay, and I said,
no, like my back hurts andhe said, and and my back
hurt because my abdominal muscles were gettingweak, which was a symptom of the
muscular Distrephe but nobody knew that's whatwas happening. And he said, okay.
He said, well, you know, we've done a skin check,
and I promise this all ties backtogether. Hold on, he said,

(05:51):
but I'm so. I'm there's justthis little spot on your forehead and I'm
just gonna use some liquid nitrogen andit's gonna it's gonna sting quite a bit,
Like most people say, this reallyhurts. And I said, fine,
great to do that. And heput this looquid nitrogen on my forehead
okay, And and I didn't flinchand I didn't move and he said,
didn't that hurt. I said,no, that was mildly uncomfortable. My

(06:14):
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 thoughtthat women were overstated their pain and so
that in that we were very painintolerant, when childbirth proves that, you

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know, as a group of youknow, women, childbearing women are not
pain intolerant as a matter of fact. But the I think there's a lot
of medical gas lighting that's been happeningfor you know, in its systemic and
cult and it's systemic. And inmy own case, because I had injured

(06:59):
my back, I was being followedby workers compensation doctors and I had no
other insurance, and so they werelooking at things for things directly tied to
this injury. And so even thoughother things were happening, I had a
doctor say, yes, I look, I understand that your back hurts,
and I can currently see that yourcast muscles are wasting away, not at

(07:24):
the same rate, but I don'tthink they're connected. And the reality was
that they were connected, just notin a way that he was going to
be able to draw a straight lineby or two or three, or connect
those dots with any thing that heunderstood. Do you think we've come from
that away from that? You thinkwe've changed, You think it's different now

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if you had experience, if youwere experiencing now, I mean that's the
question. If you were experiencing nowwhat you experienced back then, do you
think you would have had the sameissues with these medical with the medical profession,
or if we at least trying harder, we are trying harder. Yeah,

(08:07):
had I that part of the thatit is hopeful. I'm a hopeful
person in general. Part of itis personalities. The doctor that I saw
very early on who told me thatI should quit my job if I hated
my job so much, I shouldquit my job rather than fake an injury

(08:28):
turned out to be having a lotof struggles in his own personal life and
was taking it out on me.And that pleasant, right, And that's
a personality thing that you could justrun into at any point. And another
physician a year later said, Ireally just think you're you're just making this
up, and I'm going to tellyour employer that you're fine and this is

(08:52):
all just in your head, andI broke down crying, and he said,
see, aren't you relieved not tolive this sham of a lie anymore?
And I said to him, no, I'm not relieved as a matter
of fact, because there's something veryvery wrong with me. You're just not
believing me. Well, I heardthat like eighteen months later he died from

(09:13):
a brain tumor, so it's possiblethat his personality was being impacted by this
brain tumor. And so there areas a whole, I think the medical
community has gotten better. I thinkthat there's still possibilities of running into personalities
that are having things impacted by forcesoutside of your knowledge as a patient.

(09:37):
Does that make sense? So theirony 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 his behavior has becomeerratic and and different. So he wasn't
diagnosed right either. So yeah,it's it's so going through everything thing you've

(10:00):
gone through, and now I'm I'massuming your wheelchair bound. I use a
wheelchair full time. I don't thephrase wheelchair bound for me implies that I
never leave it. And so Isit on my wheelchair and I've actually gotten

(10:22):
a lot of pushback from inside thecommunity of wheelchair users who are saying,
you know, well, don't yousit in your wheelchair? And I say,
now, I sit on it likeI would sit on any other chair,
because I leave this space and I'mnot sunk down into it. I
transfer onto a surfboard. When Isurf, I get out of my chair,

(10:48):
off of my chair, and Ican sit on the couch if I
want to. And so I jokinglysay that no one's had the guts to
use duct tape or rope and strapme to my chair yet to make me
actually bound to it. And soI choose not to say wheelchair bound.
And it's the trick of language,right, that phrases keep. As we

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evolve in understanding language and understanding eachother, we modify and kind of refine
and hone up how it is thatwe speak to each other and about each
other and about ourselves. That makesa lot of sense. I think I

(11:31):
agree with you. I don't thinkif I was in a wheelchair that I
would consider myself bound. You're absolutelyright, and I'm surprised that you're getting
pushback for that. Oh not thewheelchair bound. So I don't get pushed
back inside the community about wheelchair bound. I get pushed back about that I

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choose that I sit on my wheelchairinstead of that I sit in a wheelchair.
It's kind of a really thrice Isay okay, sit on and said
it okay, I get it.So so yes, I use a wheelchair
full time and have since two thousandand eight. Okay, So being in

(12:16):
the wheelchair or having to utilize itto get around and all the challenges that
you've faced and overcome some. Youare a huge champion of the fact that
we've passed the ADA, which bythe way, is the American with Americans

(12:37):
with Disabilities to Act. And yetit's it's just a bill that doesn't cover
that we haven't pursued, that wehaven't changed, that we haven't added to
that we and you've spoken about itquite a bit that we need to make

(12:58):
some changes. Do you want toyou want to talk about that a little
bit, especially independence from discrimination?Right, well, the biggest and and
the independence discrimination is I found onone 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, andMay and May the fourth is Star Wars
Day. May the Fourth be withyou. You know, I didn't even
know that. Yes, oh,yes, May the Fourth, Yes,
May the Fourth. Right, Maythe Force be with you? Made it

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right, right, right, andso you know, they're all of these
days. While I was looking atthe calendar and saw that the anniversary of
the signing of the Americans with DisabilitiesAct, which is January July twenty sixth,
was labeled National Dependence Day National DisabilityIndependence Day, and I just kind

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of did a double take, andI was like, what am I independent
from? Like the ADA says thatI should be independent from discrimination. That's
what the signing of the Act isfor. And it's about way more than
just do you have a ramp?But we should start with hey, do

(14:28):
you have a ramp? Right there? There? There? The there's a
huge problem with access still and mislabelingof things, and that there. It

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drives my fiance absolutely crazy because we'llbe going to a restaurant and as we
drive through a parking lot, youknow, he'll say, well, you
know, where's the handicap parking AndI'm like, well, it's over there,
but they labeled that a van accessiblespot. But it's not really a
van accessible spot. And he's like, but so he used to ask what

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and now he and now he knowsthat he's learned. So that the what
I'm pointing out is that in inhandicapped parking space areas, there are skinny
access aisles and wide access aisles.Right, you've seen that, yes,

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yes, so a skinny access aisleis five feet wide and a wider access
aisle is eight feet wide, andhandicapped parking spaces there is. The law
says that there is a set numberthat have to be set aside for per

(15:58):
per number of other parking spaces fordepending on how big how many parking spaces
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

(16:19):
others can have five foot access aisles. And so there, you know,
if we just start with parking like, there's no enforcement of just basic things
like did you even measure correctly thatand label it correctly as a space.

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And there's an app I believe calledParking Mobility where you can actually report parking
violations and in theory you take,it walks you through how to take photos
of the vehicle that's parked without placardsor hang tags or part or inappropriate license

(17:07):
plate and then send that send thatinformation. It's geotagged, and it sends
that information to the local police departmentso that they can enforce it. And
that should include parking on the accessaisles. Well, I was one of
my jobs. The building that wewere in was co located with the local

(17:32):
police substation, and I went inand said, somebody's all over the access
aisle and they said, we can'tdo anything about that. And I'm like,
wait what, I'm just confused.And so the discrimination that's going on
it with mobility disabilities are hotel roomsand why why are and they're all these

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really weird, little weird little thingslike for retail shops, okay, it
says that you have to have accessaisles that are X wide and I don't
know the number off the top ofmy head, but enough space that you
could navigate a wheelchair through unless andhere's the loophole. Unless it would reduce

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the amount of merchandise that you coulddisplay on the floor, and like,
well, that's just weird. Andthere it's nothing in the regulations about how
to access a restaurant because I've stillbeen sent through kitchens, which seems like
a health hazard, like a healthcadeviolation to me. But I don't know.

(18:48):
Public transit isn't accessible the article thatyou've read. As of as of
last year, only about twenty fivepercent of New York City subway stations are
fully accessible to my ability people withmobility devices. I have yes, and

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so I had a knee replacement acouple of years ago, and I was
traveling Long Is Railroad and the subway, and where I got off the train,
I had a walk half the lengthof the platform to find an elevator.
So I totally agree with you there. Yet they're revitalizing Penn Station and

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and all these wonderful and yet youknow they're they're just they're just not thinking.
Have you heard of the new UHIt's called the International Board of Credentialing
and Continuing Education Standards, where nowit's it's required that if you're flying that

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you have to fill out of formthat certifies that you are disabled, and
if you're flying with a service animal, okay, you have to submit two
forms, verifying the animal is vaccinatedand trained before you can fly, and
that all has to be done beforehand. Have you heard of that. I

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have not heard of that. Oneof the chance I had a service dog,
and I received my service dog intwo thousand and eight, and so
my information information is based on thatand might not be up to date.
The so service animals are now legallydefined only as a dog because people were

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trying to pass off. I thinkthere was a guy who was trying to
pass up like a peacock or alizard or something. It was just ridiculous.
And that's not the same as acompanion animal for your mental health.
Those are different things. Service dogsare trained to. Service animals are trained

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to do at least three tasks foryou, and you can and they will
do those tasks on command. Andso my dog was trained to take off
my socks, which was her favoritegame on the planet. And she was
trained to brace. If I neededto pick up something that was too heavy
for her, I could put onehand on her back and brace. And

(21:34):
she was trained to hit the dooropeners, the power door openers for me,
and a whole bunch of other things. But that's all airlines were allowed
or any place where we were lookingfor access, including on airlines. So
that was all they were allowed toask me was tell me three tasks that
your service animals trained for. Andso they could not ask me for VET

(22:00):
records. I well, no,Northwest wanted them. This is a very
long time ago. Other airlines didnot. Some airlines, in order to
make sure that your needs are met, are asking that that you provide information

(22:27):
not about your disability specifically, butabout your needs related to your disability.
I'm about I'm going overseas with myfiance at the end of the month,
at the end of the year,and I just rebooked because the airlines had
changed. We were supposed to gofrom Phoenix to JFK and then JFK onto

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Madrid. And we just got anotification that said that they had booked us
from Phoenix to Newark and then JAYKto Madrid with a three and a half
hour window. And I called themup and I said, no, not

(23:11):
only no, but there's no wayon earth that we're gonna get me off
of this wide body. Last thatmy wheelchair is going to get found brought
to me. I'm going to geton it. We're going to figure out
how to get from Newark to JFKearly enough to get pre boarded, and
it makes sure that my wheelchair makesthe flight and all of our luggage is

(23:33):
gonna go. I said, that'san unreasonable request, and the gal on
the phone said, yeah, there'sno way you'd ever make that. Gee,
thanks for that information, right,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 thenumber, here's the phone number for our

(23:59):
special assistant. It's line, sothat we can have it in our system,
how much your wheelchair ways, whatthe dimensions are which they want to
do so that they can make surehow 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 an airlinepassenger bill of Rights. It includes a

(24:22):
whole section on disability and like tenthings that the airlines are required to work
with you on, including you're entitledto know the type of aircraft that you're
flying and how big the cargo dooris. And you're entitled to help to
have access to an onboard wheelchair,to 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 plane and twice to
get off the plane. So Iget picked up from my wheelchair and put
onto one of those little skinny aislechairs that you see when you get on

(25:08):
an airplane, and then strapped toit like Cannibal Lecter, and then dragged
onto the airplane and then picked upout off of that and put onto the
airline seat. And each of thoseis an opportunity to get really injured.
I like to minimize the number oflegs that I do want a flight,
like there's no NonStop from Phoenix toMadrid, which is okay and so,

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but I only wanted to change planesonce and not twice to get there.
A huge challenges that the airlines stilldon't think gets important to take care of
our equipment. They've only been requiredto report wheelchair damage since twenty eighteen,

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and I have to tell you thetheir airlines are really really proud of the
statistic that only one point five percentof wheelchairs are damaged annually, which I
mean, I don't know one pointfive percent sounds pretty good, right,
Yeah, but not to the personthat doesn't have access to that wheelchair because

(26:18):
it was damage. Right. That'sactually twenty eight wheelchairs a day, or
or over ten thousand wheelchairs a year, and it can take months to actually
get the damage repaired, in whichcase the person becomes bed bound if they
don't have a backup. And lotsof people don't have backup wheelchairs. I

(26:41):
do only because when I when myprevious wheelchair becomes it becomes more costly to
repair than to get a new oneabout every five and a half years,
and I get a new wind andI keep my old chair as a backup

(27:03):
for that exact reason that when wheelchairbreaks, you need a way to be
able to still and not be stuckin bed. And I'm if i'm I'm
either on this chair or I canonly get onto other services like a couch
or somewhere else with help. Ilive alone, and so my and my

(27:26):
house is set up great for me. But so there they're like challenges,
right, Oh, at absolutely absolutely. I'm going to ask you one more
question. But first I am talkingwith my guest Heather Markham on my favorite
radio station, wo R seven tenand we are kind of talking about disabilities

(27:52):
and what are the solutions? Howhow much further do we need to take
the ADA to correct the pro problemsthat still exist. So going back to
them, yeah, and or enforceit. You're absolutely correct. So going
back to that International Board of Credentialing. They so they want to issue a

(28:14):
card for those that are disabled,but that card is to certify that you're
really disabled. So I you knowa lot of civil rights lawyers or disability
rights lawyers have said that's you know, it's it's it's really a violation of

(28:36):
someone's rights. But do you thinkit would solve anything if if you didn't
have to continually you know, havepeople I mean, in your case,
it's it's it's evident. But butthere are some people I know that will
be put in a wheelchair just sothey can or you know, come with
crutches or whatever it is, justto get on the front of a line,

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or you know, do you thinkit's it is one of the solutions
to prevent that kind of impostoring,if you want to call it. I
think that people are always going togain the system in a way that suits
them. So I think that thereare I I think it could be helpful.

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I understand the the potential HIPO violations. I understand the the separation right
that comes with I have a Ihave a National Disability Card M But you

(29:47):
know, would it help I don't. I don't know. I don't know
the answer for that. I doknow that there are wh when we're looking,
and we're looking in Europe. Iknow that museums in Europe and probably

(30:07):
here in the States offer reduced admissionfees if you have a disability Cool,
Okay, great? What do Ineed in order to as a non as
a non European resident? What doI need to show that I you know,
so that you can write something downon your little ledger rather than you

(30:29):
know, she showed up in awheelchair. We're on a wheelchair. You
know, what do I need towrite that down? I actually took my
handicapped placard and a photo ID andthat's what they wrote down in their log.
They actually have a the there's adisability ID card which I'm actually gonna

(30:53):
apply for because it will get mefree entrance to We're also going on to
Paris, and so the door say, and to live and the you know,
money's money, So it's it's niceto have free entrance to those things.
But people, I live in aretirement community and there are lots of

(31:15):
people who have handicapped placards that theykept after their spouse who needed it passed
away. That's what I mean bypeople are always going to game the system
if it's suits the impositive, right, the impostor. Now the challenges that
you could in my own case,when I was very you know, I

(31:41):
so I became symptomatic at twenty two, and so at twenty five years old,
I was struggling to walk a longdistance, and by a long distance,
I mean a hundred yards, okay, So that became really challenging when
I needed to do things like goto the grocery store because I needed a

(32:04):
park as close as possible, andthen go get a writing scooter with a
basket in the grocery store. Andpeople thought I was an impostor because I
didn't, you know, I didn'tlook sick, you know, And some
days I had and I had gooddays and I had bad days, and
so there's the you know, areyou going to make me justify myself every

(32:30):
single time? You know? Buteven with a handicap placard. People would
look at me and say, well, you don't really need that. Well,
it's unfortunate that you think you decidewhat I need, you know,
And that's we're judgmental. We ashuman beings are judge. Are people who

(32:51):
judge right, right. We makejudgments about everything, including what we see,
and if it doesn't match our ownlived experience, then we think the
other person to be untruthful. Right, talk a little bit about and this

(33:12):
struck me, the marriage equality.Oh yeah, excuse me. So it's
so there's this very strange thing that'shappening, and it's that. And so

(33:32):
I let me let me start bysaying that all of the information that I'm
going to provide is stuff that Ifound through research and not through my own
lived experience. I have worked myentire life. I have not been on
Social Security disability or Social Security incomenow Socialcurity income, and I'm just gonna

(33:57):
read to you real quick out ofthis thing because it's right in front of
my face. SoC Security Income SSIis a federal assistance program that provides monthly
payments to adults and children with thedisability or blindness who have income and resources
below specific financial limits. So andin order to receive Medicaid healthcare Medicaid healthcare,

(34:19):
you have to be receiving SSI.A single person with the disability is
at risk for losing both their SSIand their Medicare because the SSI benefit calculation
takes into account both their own endcurrent come and their spouses deemed income.

(34:42):
So if I get if I haveSSI and I'm receiving seven hundred and sixty
eight dollars a month, because that'skind of what SSI is, it's just
barely subsistence, and I get married, Now they take my spouse's income into
account and can reduce my SSI tothe point that I lose my health insurance.

(35:06):
And what's really wacky about this isthat this has been talked about for
more than twenty years openly. Infact, in two thousand and three,
there was a policy of paper thatnoted men and this is twenty years ago,

(35:27):
are presenting themselves as husband and wifebut not legally married. They're just
cohabitating. And someone decides that theyare living as man and wife, then
they're found to be whole considered They'reconsidered married for the for SSI purposes,

(35:47):
and the partner with the disability couldlose their benefits, could lose their SSI
income and their health insurance. Becausesomeone in the community called the married and
decided that they were married, thenthey would be reported as married, whether
they were legally married or not.I mean, I don't even under the

(36:12):
government. I don't either, becausethe government is now dictating when when they
consider you married and when they don'tconsider you married, and I think that's
something has something has to change there. I mean, look, let me
tell you something. If I didn'twalk down the island, I didn't have
a judge telling me I'm married,I'm not married, done right, and
no government is going to tell meI am so. And look for some

(36:37):
people that don't have to be onSSI, I mean, if they want
to be considered married. Yeah,there's some perks there, I guess,
but you know, you can't collecton someone's Social Security if you're not married,
So why would they exactly so whywould they base it. That's a

(37:00):
that's ridiculous and I think that's somethingthat needs to be changed because they do
that with young children too, ifthey're you know, if you have a
child that's on the spectrum or ischallenged in some way. You know,
even though the parent gets up inthe morning and has to go to work,
still have to provide for the child, and you know, they have

(37:22):
to be home certain times and theyhave to and so why wouldn't the government
subsidize that. You know, Look, if they're making five hundred thousand dollars
a year, I get it.But you know, if you're making thirty
thousand dollars a year and you maybehave some a little money in the bank,
what why I don't get it.That's nothing today, SSI actually,

(37:46):
and in order to be on medicaid, your financial resources can be no more
than two thousand dollars exactly, andyou can't make and I think you can't
make more than eighty eight hund withdolls a year or something like that.
Yeah, the numbers are just completelywhackadoodle. And I know, interabled partners

(38:08):
or even even couples where both bothpeople have a disability or intellect the weird,
the weird term interabled partners. Mymy fiance is able bodied and so
weird. And I said to him, get ready, We're about to be
an interabled partner. You know,partnership and He's like, that's just weird,

(38:30):
and I'm like, I know,I know, excuse me, But
so for for interabled couples to thennot be able to marry, you know,
because of because of losing health benefits, or couples where both partners have

(38:53):
disabilities to not be able to marrybecause they will lose health benefits is just
it's just frustrating. It's so frustrating. Why don't I have I thought we
had a quality, I thought wehad marriage equality, right, but we

(39:14):
don't. Well, New York Cityhas something called domestic Certificate of domestic Partnership,
and if you have that, thenyou can get from an employer.
Most employers will participate in you know, the health benefit part of it.
But but you're right, I mean, you know the majority of young people

(39:38):
today are not getting married, andso you know, why why not share
what we can and what we don'thave to share? We don't have to
share. I've, I've It's justyou know, things have to change.
You know, we talked a littlebit before about the word into dependent okay,

(40:00):
independent Disability Day, And I knowyou also have an issue with some
of the signs I've seen recently,calling it disability pride. Month, Tell
tell me when I first ran thatby you, what you said to me,
because quite frankly, even I didn'tget it, but not from you,

(40:23):
but I didn't. I didn't getthe whole wording like disability pride,
Like what are you thinking? Andso I'm I'm probably gonna get a lot
of pushed back within the community aboutthis, but I'm just gonna go ahead
and stick my foot in it.You go, I'm not pride. I

(40:45):
am not proud of the fact thatI have a disability. I this and
it's it's very strange, so becauseI acquired my disability, but it's genetic,
but it came on over time.Mostly I'm just halcked off that I

(41:07):
have a disability, which is strangeto say because I'm generally an optimistic and
hopeful and happy person. But somedays I'm really frustrated about the fact that
I have a disability. And oh, I understand the need for the group
to gather and say we're mad asHelen, We're not going to take it

(41:30):
anymore. Okay, Yeah, Iget that. And and so somebody said,
well, why don't we have aflag and it's fairly recent and she
made a flag. Well, that'sawesome. People are going to rally around
flags. I'm not going to beone of those people because I'm just not
a person who rallies around like that. But and so all through Disability Pride

(41:57):
months it, people were like,see, I'm proud of my disabled body.
Okay, that's awesome and good,and we need to normalize what it
looks like to have a disability becauseit's just still considered abnormal. But I

(42:22):
mean, the entire population who donot already have some form of disability are
one accident, one heartbeat, onebrain bleed away from having a disability.
But you know, we all thinkwe're twenty five and indestructible, right until
we figure out that we're not.I'm an aging you know, aging creates

(42:47):
disability. Oh without it down andand and it's sort of I don't know,
and probably if you're going to getpushed back, I'll probably get pushed
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

(43:09):
this way. No, I'm sureyou're not. Okay, No one wants
to have a disability, whether itbe mental or physical. They want to
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,

(43:37):
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,
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

(44:00):
an adapting survivor for sure, right, and I've gone from just surviving what's
going on to really thriving in itand figuring out how to live the biggest,
best, boldest life that I can. You know, I'm while looking

(44:21):
for curb cuts. He can getme a sidewalks then, right. So
you have a company if there's achallenge to do I want to do?
Yep, I do have a copyou want to do? Yes, you
have a company. It's called MakingWaves for Good. It was launched in

(44:43):
twenty eighteen, and it kind ofwas an umbrella for a variety of ventures,
including publishing and photographic projects. Tohelp companies solve disability access problems that
they they didn't even know they had, although I disagree with that, most
of them do know they have them. Can you elabrate a little bit on

(45:08):
that, sure? So the lastpart of that is what I call adia
usability. And so my biggest petpeeve in the world at the moment are
public bathrooms in such that it's allgreat if you've made an accessible stall,

(45:29):
but if you didn't put a handleon a little tiny handle on the inside
of that door, now I don'thave an easy way to close it without
touching the under side of the door, and that's just gross. But there's
nothing in the regulations that says thatthat handle has to be there, So
that becomes an adia usability issue,right And yeah, so the Operable Parts

(45:54):
regulation for items placed on walls andso they're maximum reach ranges when you talk
about if I'm gonna drive out,if I'm going to approach it from the
front, or if I'm going toapproach it sideways, so forward reach versus
sideways reach, and then there's obstructedlike if I'm at the sink, I'm

(46:16):
going to try and put this.I have all these images in my own
brain, but realize they're not translatingvery well. So if you walk up
to a sink in a public bathroom, and I'm going to roll up to
the sink, So now now thesink countertop is an obstruction, and the
regulations talk about obstructed reach range.So now I can reach not quite as

(46:39):
high if I have to reach pastsomething. If you put the soap dispenser
on the back wall past the sinkat forty eight inches high, someone who's
standing can use it, but Ican't sitting down. And so but if
you move the soap dispenser to thewall next to the sink and you put

(47:00):
it at thirty six inches hide,it might seem a little strange to someone
who's standing there, but still usable. But now I can actually access it.
So again ada usability versus what's code. Because for uninstructed retrains, the
max height is like forty eight inchesand that's you know where you put your

(47:23):
hand under to get the soap.Well, I don't have a chance on
earth of reaching that. And soyou know, not being able to wash
my hands in a public bathroom likewho And you're right, you're right,
and you're absolutely right. And nowin my I have visions in my mind
of picturing all the airports I've beenthrough and all the places I've been where

(47:46):
you're absolutely correct, this sink isand if there is a cabinet underneath it,
you can't even get your wheelchair closeenough. You know, my old
school, my high school, convertedto a children's learning center, and they
they took some of the bathrooms andthey they put in lower sinks for these

(48:10):
young people and toilets. And ifthey can do that for children, why
can't they do that? Why can'tthey recognize that, Yeah, there are
people in wheelchairs and you know,they need to reach the sink, they

(48:30):
need to reach the soap, theyneed to be able to get the wheelchair
close enough. And you know,we're going through all these revisions everywhere.
Why why haven't they got about that? I mean, it's great to have
a handicapped bathroom, and it's onlybigger, that's all. It is,
just bigger. But if you can'tdo any figger with grab it's bigger with

(48:52):
grab bars. And the frustrations stillbecomes that if we want to go somewhere,
if I'm gonna so grace, youand I are going to go to
the same restaurant, okay, andit needs a reservation. So you call
and you say I'd like a reservationand boom done. When I call,
I'm gonna have to ask is yourfront door accessible? This is the path

(49:15):
from the where I'm going to parkto the front door accessible. Is the
front door wide enough? Is theregoing to be enough space to navigate my
wheelchair through? Do you have alow table that I can sit at?
Is your bathroom accessible? And byaccessible, I mean is there a stallving?
Is there a wheelchair accessible stall?Are there grab bars? Is the

(49:38):
toilet paper reachable? Can I pullup underneath the sink? Can I access
the soap? And can I accessthe paper towel? And then can I
get out of the door by myself? So now, and we're trying to
go to the same place, correct, This is ridiculous. We were just
in Dallas and we went to thisvery nice restaurant and before we left,

(50:01):
I said, I said to Paul, I need to use the bathroom.
And we went and there was adoor stopper that stopped the door from swinging
fully open because of where they hadplaced the sinks. They didn't want the
door to whack the person in thesink in the behind while the person was
standing at the sink washing their hands. And I was like, and I

(50:22):
called the manager over and I said, you've set this episode that I can't
get my power chair through here,even though there's a real My fiance says,
there's a really nice, gigantic wheelchairacasible stall in your bathroom. And
they're like, oh, we didn'teven think about that, right, you
didn't think about it. And thechallenges is that people still aren't thinking about

(50:42):
it. But why wouldn't it bepart of the code, part of the
ada. Why wouldn't that have beenpart of it? I mean, it's
part I don't know who checked thebox that said that that was okay.
It was apparently they didn't check abox, Pobby, because they didn't put
the box in there, right,But it seems a bit ridiculous. You're
absolutely correct. You know you'd beyou'd be proud of me in a way.

(51:06):
So I used to have an officeat five hundred and fifth Avenue,
and I know that anybody's listening fromthey're probably gonna hate me. But so
they redid the whole front of thebuilding and they didn't have a handicapped accessible
where you could hit the button onthe outside, the door would open and
you would be able to go in. So I questioned them and I said,

(51:30):
how is if you're in a wheelchair, how are you supposed to get
in? Oh? Well, youjust waved to us at the front desk,
which was ridiculous because they would havenever seen you, and we'll hit
the button from the inside. AndI said, well, why couldn't you
just put the button on the outsideAnd they said, because it would have
meant rewiring and breaking through the marbleand blah blah blah blah blah. And

(51:54):
I'm like, I've never heard ofanything like this in my life. You
expect someone to sit out there untilsomeone at the front desk realizes you're out
there to let you, to letthem in. I mean, this is
a building on Fifth Avenue, soyou know they think they're complying, but
they're not. And yes, I'mvery proud of you for bringing it up

(52:20):
and asking the question and saying,you know this is this is not a
reasonable accommodation because the ADA simply saysreasonable accommodation and there is no there's no
part of you wave at me andI opened the door. That is actually
a very good, reasonable accommodation becauseI should have access at the same level

(52:45):
as anyone else. Unfortunately, wehave run out of time, but I
am going to leave my listeners witha thought that you that comes from you,
and that is limits are only inyour mind and nearly anything is possible
with the right team, tools,help, and perseverance. Thanks everyone for

(53:07):
listening to this episode of Becoming theJourney. I would love to have you
keep tuning in on w R seventen iHeart Radio, and you can follow
us on Instagram at Becoming the Journey. Heather, thank you so much.
I hope anyone listening that has anykind of disability and not because we can't

(53:29):
predict the future, can fight forthis. Thanks Grace. I really appreciate
your time. My book is availableat heathers c Markham dot com. Maybe
you'll drop a link in the shownotes for me, that'd be great.
Absolutely, okay, Thanks Heather,Thanks Grace. You have been listening to
Becoming the Journey, hosted by GraceLavray. Tune in weekly to hear more

(53:51):
conversations that will inspire listeners along theirlife's journey. The proceeding was a paid
podcast. iHeartRadio's hosting of this podcastconstitutes neither an endorsement of the products offered
or the ideas expressed