Usher Type 3A
Rebecca Alexander
Having a condition that's causing me to go deaf and blind makes me keenly aware of how it feels and what it means to really be alive.
Hi Rebecca welcome to the podcast thank you so much for being here we are both so excited to talk to you and welcome.
Rebecca - thank you I'm glad to be here
yeah no thank you so much Rebecca for being with us today I'm super excited about this conversation with you honestly you are like badass Superwoman busy woman right. mental everything that you do I think like you wrote a book uh you are an author it's called Not Fade Away you are a therapist you are a fitness instructor. You do crazy athletic challenges stuff uh you are a disability right Advocates. You did like a talk you do public speaking you how how do you handle all that
Rebecca: that's a good question you know it's it's people sometimes ask me whether this is something I was born with or if it has to do with having a condition Usher syndrome that's causing me to go deaf and blind and whether this sense of urgency that I have comes from that and I don't think it's as simple as yes I'm
going deaf and blind and I want to do everything that I can but I also think that that's a big part of it but I think that having a condition like Usher syndrome that causes Progressive deafblindness makes me keenly aware of two things a sense of time and how precious time is and also a sense of how it feels and what it means to really be alive and what makes me feel alive which is a very important reminder because very often we take life and everything that we have for granted until you release some happen and then we realize we have those realizations that life is precious and all the little moment all the people that we have around us we should appreciate them a little bit more and it's often the case right anyway for I think most of us
well and I think that you know it's interesting because the types of things we hear so much about practicing mindfulness and having gratitude and it becomes uh spoken so many so many times and so frequently in mainstream culture that people don't even really even register it anymore just like yeah yeah I gotta be mindful and they don't even know actually what they're talking about or what gratitude means and I was one of those people for a long time and I will tell you that being able to use my other senses like being able to learn Braille and to develop the muscles in my brain and on the very tips of my fingers to learn this new type of reading and registering information I feel tremendously grateful for the fact that the human body is so adaptable and malleable in whatever it is that we face and so whether it's the ability to learn Braille whether it's the ability to find the top to my pen that I dropped on the floor that for anyone it would be nothing they would find it in two seconds for me to be able to find that pen top feels like a win because it's something that you know the littlest things that uh are just nothing to people are things that for someone like me I feel very very grateful to to be able to do
hmm so before we dive into like mode in detail of your story can you tell us a little bit about about yourself and about the syndrome that you mentioned just a quick intro basically
Rebecca: yeah so I am Rebecca Alexander my pronouns are she/her. I live in New York City I have a condition called Usher syndrome type 3 and Usher syndrome is the leading genetic cause of death blindness in the U.S and around the world and so there are three types of Usher syndrome a person born with Usher syndrome type one is born completely deaf and they're progressively losing their vision a person with Usher syndrome type 2 is born generally with a specific amount of hearing loss and they're gradually losing their vision and their hearing loss tends to stay pretty stable until they get into their later adulthood and a person with Usher syndrome type 3 what I have experience is the mildest onset of both Progressive vision and hearing loss and so for people without your syndrome type 1 and type 3 generally we also have issues with balance not as commonly with people who bust your syndrome type two but when I was 12 I had difficulty seeing the blackboard at school and I told my dad that I thought I needed glasses he took me to an optometrist they said there was something in the back of my eye their equipment wasn't sophisticated enough to identify what it was they sent us to ophthalmologists this was in the San Francisco Bay area where I grew up and I was diagnosed with something called retinitis Pigmentosa or RP and I was told that by the time I was an adult likely by the age of 30 I would be completely blind and so then at about the age of 18 or 19 I woke up with really loud ringing in my ears and The Sensation was that I couldn't hear people speak to me over that ringing and after about it's almost like what you if you go to a really loud concert and you leave the concert and you have that ringing it's called tinnitus or tinnitus either way you say it it's the same thing people who are War veterans who are exposed to very loud sounds they oftentimes experience tinnitus and so that's what I experienced and after about a week or so it wasn't going away so I thought I better get this checked out and at the time the type of Usher syndrome I had had not yet been diagnosed or had not yet been identified so they diagnosed me with Usher syndrome they said they've never seen it as it presented itself in me but because I had Progressive vision and hearing loss it couldn't be anything else and it was actually my own family's blood work and a researcher in Helsinki
Finland that helped identify Usher syndrome type 3. so um yeah and so but so that's the disability the condition I live with but I am a psychotherapist in private practice in New York City I specialize in anxiety depression and mindfulness I do a lot of different types of practice with people who are cited and hearing that's the majority of my practice but I also have some people who are deaf who are deafblind or who are blind and so I I really kind of work it with all of these different communities and feel very grateful to be able to do that because you know in my own life I've learned sign language and have had to develop my own skills to communicate and maintain my autonomy with a condition like this so it's really allowed me to be a part of different communities and I'm an extreme athlete I love physically challenging myself I teach group fitness classes and I wrote a book A Memoir called Not Fade Away A Memoir of Senses lost and found in my own process of coming to terms with a condition that causes deafblindness I found that reading other people's Memoirs was particularly meaningful and cathartic even if we had very different lives or circumstances I always found these nuggets of Insider information that really resonated with me and I hadn't seen anyone who had a book that was about the experience of living with this condition and so I decided to write a book and yeah that was about eight or nine years ago yeah that's amazing and just to keep going about the book while we are talking about that
Interviewer: um I see on your website that there is something about maybe turning the book into a movie like something about Netflix something about Emily Blunt is that the real thing yeah you know this has been I think they bought the movie rights in 2016 and it's 2022 getting close to 2023 and we are still in the process of moving this forward so it gives me a whole new appreciation for my profession because my profession is all about trying to understand the truth and what's real and Hollywood is a little bit different than that [Laughter] but so yes it is still in the works and process of becoming a motion picture and that's been an interesting experience for another podcast to say the least but I can imagine yeah yeah would you get to pick who plays you well you know because since the time that they bought the rights to it so much has developed and changed Within These social justice movements that I think that I do have a much more demonstrative role now in deciding and determining how this plays out so it's interesting we'll we'll see how this continues to transpire to work out exciting yeah if or when that happens
Interviewer - you can come back on the podcast and tell us all about it yeah you got it I'd love to yeah so when um to go back to your story when you were diagnosed in kind of two steps
because first it was because of the vision and then because of a hearing you were young you were still like a
teenager young adult still you know developing yourself developing your personality finding who you are how did
that affected your confidence growing up as a teenager you know becoming a woman stuff like that
how was that impactful yeah it's a good question you know to so
and hear from a psychotherapeutic standpoint developmentally a 12 year old if you
tell them that they're going blind you developmentally I wouldn't be able to really wrap my head around what that
means what that looks like and not only that I was really a sighted person I was
raised as a sighted person and so what I knew at the time was that I had difficulty seeing at night and that I
often tripped over the dogs who were below me if they were lying on the floor or coffee tables I had my worst Vision
was right below me mostly people who have RP experience tunnel vision so they
lose their periphery and then they lose their central vision and I have a sort
of rarer presentation where I have donut Vision so I have this outermost periphery of my vision where I see my
hands and then if I bring my hands in I'm showing you I'm sort of bringing my hands from outside to end I don't see
them I don't see them I don't see them I see them and it's sort of hard to explain to people what that looks like but it's
sort of like when it requires a lot of scanning and a lot of being able to you
know navigate my environment and over time as my vision loss has continued I
have started using a cane because it provides a lot of information for me that my vision no longer can and you
know the whole development of having a relationship with your cane for people who are progressively going blind is a
whole other conversation because it really is somewhat of a coming out process of having a condition that's
causing you to lose two of your vital senses and having to go from being seen in the world as a fully able-bodied
person seemingly to being out in public as someone with a disability there
really is a coming out experience that many people go through with that and
it's it's very emotional it obviously has the physical implications but I
think that to be able to go through that and get to the other side has been been one of the most meaningful experiences
of my life and what was the oddest path for you
personally was it the emotional side of things like accepting that you were gonna have to
spend your life with that or was it more the you know physical side of things of like
I need to learn how to navigate the world with without hearing and seeing as much as I had before what what was much
challenging for you personally so it's a good question you know we I grew up and and many of us continue to
live in a very clinical and medical model type of world so when I was let's
say 15 or so I was promised that in 10 years there would be treatment to stop
for the progression of my vision loss and then 10 years later I was promised that in 10 years there would be
treatment to stop the progression of my vision loss and then in 10 years and so
what I started to realize is you know I have a very interesting and I think I
wouldn't say complicated because that's too strong of a word but I have a different relationship with hope
and you know there's a a Buddhist monk as as you both likely know very well uh
Pema shodron she wrote When Things Fall Apart and
the places that scare you and all of these different books that are about dealing with adversity and you know she
says to abandon hope and you know I I've always sort of wrestled with that and tried to
understand what it means to live with hope and I think it is so important for all of us to live with hope but what I
realized is that the way that I saw hope was hoping for treatment hoping that
there would be some way of stopping this further progression of my vision loss of really relying and hanging on the every
words of these researchers of these scientists of these doctors and clinicians and that so many of us in
this community really hang on the words of these clinicians and the carelessness
with which these researchers and clinicians provide information whether
it's because they're trying to raise research dollars whether they actually believe what they're saying I don't know
but what I do know is that when I started to really focus on the
psychological and emotional implications of living with a condition like this I
started to really feel the necessary changes I needed to make to develop not
only self-confidence but self-worth and a sense of
of self value and knowing that having a disability did not mean that I was
damaged that I didn't need to be fixed and I I think that I I started to
develop resentment towards the medical world because of the carelessness with
which they sort of discussed finding treatment and how often and how
frequently that has not happened and so when I started moving into further the
things that scared me most so if I was diagnosed with a condition that's causing me to go deaf and blind then
what is my biggest fear going deaf and blind and that's my
biggest fear then how do I come to terms with that and the way that I've had to come to
terms with it is by quite literally exposing myself to both of these worlds
and these communities and to putting myself out there as a person with a disability and taking on all of the
preconceived ideas that people have about what it means to be someone with a disability and over time as I've
developed this level of self-awareness of self-acceptance I've realized that
it's actually not it's no longer my discomfort with my own disability that I deal with I now am out in the world and
it's having to take on the discomfort of everyone I come in contact with of
having to take on whether it is that they have a savior you know complex or they want to help me which I sincerely
appreciate or whether they think that someone with a disability is incapable whatever it is that's out in the world
that I have to absorb that or that I take that on with every interaction I
have and so having to shift my thinking into this is not my stuff this is theirs I am
fully confident and comfortable with what my circumstances are but it's other people's discomfort with what I
represent to them or what comes up for them when they see me that I have had to
try to navigate and I think that's been very informative for me to recognize
that I don't have to take on the belief systems or the views or this the weight
that everybody else carries around with them about disability yeah exactly how does yeah it does how
does the fact that your disability is um how do I wear this like not obvious
like when you think of disability you kind of think of someone doing a wheelchair or somebody with cerebral palsy or something that's like really
obvious and then you know looking at you look like an able-bodied person and I wouldn't necessarily know that you're going deaf and blind so just is that
like an added lady but to explain to people like hey I look this way but actually I'm struggling with this this
and this like does that I mean obviously that plays a huge part as well that you don't look disabled but you are living
that experience if that makes sense yeah and so that that's a very good question you know there's a few things
one of which is that so I have Cochlear implants and uh for those of you who
can't see this I'm taking off my cochlear implant from the side of my head to show you too what that looks
like and it magnetically adheres to the side of my head and that's how I hear and there's a t mic
that actually hangs over the opening of my ear the the you know the tunnel of
our ear what am I what's the word I'm looking for so where you're here sound register it
sound and it gave me the sensation of hearing through my ears when I'm actually hearing through the side of my
head through the cochlea but so technology is really incredible and you know I've I've had to relearn how to
hear digitally which is a very interesting and humbling experience but so when my hair is down people don't
see that when it's up you know people can see it and I don't hesitate if I'm
let's say ordering coffee and it's very noisy and I don't hear the Barista I'll say I'm sorry I'm hearing impaired you
mind repeating yourself and so I I own that now I you know it
might not be something that people can see but I have no problem letting them know yeah but the the other thing is is
that is part of I think of a motivating factor for people who don't use their cane or the assistive devices that could
be useful to them to start using it because what I found was that when I wasn't using my cane if I bumped into
someone or if someone bumped into me I usually got a few four-letter words thrown at me you know watch where you're
going and really sort of you know obviously it's not personal but it's hurtful when people say things like that
to you and I realized you know if I was using my cane instead of calling me names they'd likely be apologizing yeah
and that it was a way to give people information so that I wouldn't have to tell the world that this is you know
that I had low vision and it at least would register in some way for them but
but I think most importantly is that when we see people walking around
having a condition like this makes me so aware of the fact that we have no idea
what people are walking around with you never know what people live with who you pass on the street who you prejudge and
we all do it we all do it but you just don't know what people live with the the
burdens they carry and what what conditions they they may be masking or
that they may be coming to terms with yeah conditions trauma you don't know what's happening when they go home you
know once the door is closed yeah and we all make assumptions we all make judgment based on what we see based on
what we perceive but we don't yeah we'll do that I think yeah we're also very afraid of being judged we're so
conscious of what other people and how other people perceive us and that stands in our way of being able to ask for the
accommodations or be willing to accept ourselves for what we need and Who We
Are talking about that now like obviously you like you said you you own who you
are you are very confident woman you do like public speaking you don't talk Us on YouTube with like thousands I don't
know how many views stuff like that but I guess when you were when you were younger uh
you know like we all have self-confidence issues at some point in our life
um how did uh how did you navigate this time and how did you find those Trends to overcome all those
challenges to be like okay this is who I am and and you know yeah accept it so I
was like most adolescents and teenagers I was very self-conscious I I was
fortunate to have a twin brother I think that was sort of like a built-in cool factor of being boy girl twins
and uh my brothers were protective of me but we were we
were team players so I I think that that certainly helped it was a buffer for me but when I was younger my so my parents
separated and divorced at basically the same time that I was diagnosed with RP
and so I think there was a Confluence of different things that happened
simultaneously that really fed into some of these belief systems I had about
myself I I grew up with a mom who I viewed as perfect and perfectionism was actually a
way that she managed her own anxiety and she in my eyes was so perfect that
her maiden name was pink like the color pink and so as a little girl you know she had
perfect handwriting she had a beautiful singing voice she was just perfect and I never felt that way
and I never felt like I was the perfect daughter that she wanted I think that from a very early age I felt like there
was something wrong with me that there was really something something deeply flawed about me before I even had my
diagnosis and so when I got the diagnosis as much as it was
maybe overwhelming again I couldn't wrap my head around what it meant it didn't feel that surprising well of course if
I'm someone who's deeply flawed or screwed up then of course I'm going blind like
someone who has problems or is you know not a perfect person or not what maybe
her parents wanted her to be that was my belief system then of course it would make sense that I would have a condition
like this it didn't feel that surprising and so I lied a lot I lied about the
silliest things and I lied about anything and everything to mask what I
believed was the feelings of not being enough and I I write a lot about this in my
book it was never malicious things but it was always lies to make myself seem like I
was better or more important or special than I actually was it was a way of
trying to show that I was I was good that I wasn't this terrible person that
I truly believed that I was and so that's a lot that's a lot to grow
up with it's a deep-seated belief system that listen as a psychotherapist you can imagine how much therapy I have been
through myself not just for training but also in coming to terms with a condition
like this and also as a psychotherapist I think that we have a moral and ethical
obligation to see therapists ourselves because when you are responsible for
mental health and well-being of so many people we have an ethical obligation to
take care of our own Mental Health that makes sense yeah it is fascinating
though after going through all that and having those beliefs you became a
psychotherapist is it connected by anything or you just wanted to become a Psychotherapy it's just that was like a
colleague for you or whatever or is it not related at all yeah no that's a good question so I actually wanted I I
thought that I wanted to work in I was always fascinated with Africa I wanted to work in a francophones country like
Senegal or the Cote d'Ivoire I I really we grew up speaking French in my house and so I always imagined myself doing
something abroad in a developing country working in a community and so when I graduated college I was going to do a
program in Ghana West Africa and just before it was scheduled to to leave
Dengue Fever broke out and they canceled the trip so I ended up moving to Los Angeles I
moved in with my twin brother and a friend he was starting law school and had to figure out what I was going to do and I started applying for the Peace
Corps and as I was filling out the application and it's asking me whether I'd want you
know sort of the the accommodations that would be necessary for me whether I would be willing to live in an area that
had no running water or that had no electricity I realized you know at the time I wore hearing aids I wasn't
cochlear implanted yet I thought to myself so my hearing aid breaks down it's not like I can run to the
audiologist and get it fixed and so I had to be more mindful about what would
be sustainable for me for long term and I I grew up with a lot of Mental
Health and mental illness around me and so I think again it was just a combination of
all of these things but you know in training to become a psychotherapist you
it's sort of a you two kill two birds with one stone you get to learn a lot
about yourself and how these different ideologies and methods and theories apply to yourself
but also how they can be meaningful when you work with others so it was a process
of self-discovery and wanting to learn but it was also because I have all of
these different parts of my life that were influential in me understanding how
crucial mental health is to our overall health and well-being more than anything else our mental health is the primary
factor in whether we we live a meaningful and fulfilling and strong
life that's a very powerful statement especially in a society it is changing
but in a society that or have been putting physical health and the way we
look especially in the Forefront of everything and every single decision
right it is changing but that is a massive statement I think to say I feel mental
health should be the priority because and I agree but ultimately yeah like
you can have the body the you can feel as good as you want if in there in the
head you're not right it's yeah ultimately it's not gonna go anywhere but it's a big statement yeah I think
that one of the it's interesting so many people that I work with and you know
because of covid mental health has really been thrown into the Forefront in the spotlight and it's actually being
dare I say taken seriously now and I think that it's different than the
way that we look at cancer it's different than the way that we look at all different types of
conditions because it affects your brain it's how you think
and so it's not like someone says to you you know I think these medications would be helpful to you in addition to these
behavioral techniques or these behavioral techniques would be helpful to you
people think that they can if only I had enough willpower if only I had enough of
the strength to get myself out of bed they believe that there's something
within them that they should be able to work from or tap into that will bring
them back to full health again and people medicate they self-medicate with
alcohol with drugs with sex with gambling you name it they they
self-medicate with anything and everything but as soon as you start talking about mental health and
potentially I'm not a proponent nor do I feel like medication is a bad idea I
think it's a very personal decision but when it comes to taking psychotropic medication that can be far less
damaging to a person and potentially helpful people absolutely resist no way
there's there's no chance I'll take medication but I will continue drinking alcohol until I have cirrhosis of the
liver or until I you know have withdrawal and I can't stop shaking it's
so it's it's pretty interesting how people kind of deny their own Mental Health yeah definitely yeah and we we always
put this label on antidepressant I don't want to be addicted to it but yeah but I'm gonna drink a bottle of wine every
single day that's fine it is when you think about it it kind of makes no sense but yeah right
um so when you um at what point because I I was going
through your website like you in terms of being an extreme athlete uh you've
done some pretty crazy like you find the Kilimanjaro you swam to like
Alcatraz Island like prison um youth cycle for like 600 miles
um are you've done some pretty extreme stuff um how did you get into like I'm gonna
be this but as athlete doing all those crazy stuff and being pain for three days
after because I can't walk anymore yeah it's a really good question so you
know I think that I have having a condition that I have no control over I can control what I eat there's no
treatment for this I you know eat a lot a lot of leafy greens and I do that
purposely because to me psychologically but also we know science suggests that it can be helpful in
providing nourishment for my eyes to help maintain the vision I still have but essentially I have a condition that
I have absolutely no control over I have no way of stopping this or knowing what the trajectory will look
like but I can control my physical strength I can control how I take care of myself
how I treat myself what I decide to do to challenge myself and so when I do
these extreme races or when I swam from Alcatraz to shore climb Mount Kilimanjaro
I have this tremendous feeling of being alive of focusing on the things that I
can do and not the things that I can't of really being reminded of how
able-bodied I truly am and that our mental health of the
limitations that are either projected onto us or that we come to believe ourselves are simply just that their
belief system they're not truths and so I think that that has really allowed me
to feel so alive it gives me goals to work towards and I love you know I would
say I'm a little bit of an adrenaline junkie not as much as I do but you know bungee jumping skydiving I've done all
of those things just because that feeling of being alive and of being so
completely present to the moment is something that there is really no replacement for
hmm it's interesting as well because I think so many people I think probably less now because I've
covered people are now working at home but I think so many people kind of get stuck in that nine to five for 40 years and then I'll you know I'll go to Africa
when I'm 60 when I'm retired but you're never guaranteed to get to 60 and retire so I love the fact that you're like you
know living life now and doing what you can now because obviously you're very aware that you're cycling vision is
getting less and less so you're trying to do as much as you can while you can and I think that's such an important reminder for people that are kind of
waiting until I'll do it next year or you know in 10 years 20 years time I think it's a really important reminder
to live life now and do what you want to do now and I think that you know we we save up
and we think about the future a lot anxiety as you guys likely know anxiety
is rooted in future thinking and depression is generally rooted in in past thinking and experiences and so
this is part of just another reason why we practice mindfulness and being in the Here and Now and you know people talk
about bucket lists I hate the idea of a bucket list because to me it's sort of like checking off something you know to
do before you die and instead of focusing on this is something I want to do before I die how about this is
something I want to do because I think it will make me feel so alive it will allow me to engage my sense of smell my
sense of touch my sense of sight or Vision or hearing whatever it is that
it's the the idea of doing things that make you feel alive not things that I
want to do before I die if that makes sense yeah yeah the
intention behind it I think yeah yeah what is the craziest that you
want to do to feel alive that you haven't done yet is there one thing left that you like I need to do this yeah you
know oh there's so many things I you know I spent a couple summers ago before covet I spent a summer in Thailand
volunteering with elephants I love love elephants and so that was one of the
things that I would love to go back and do Thailand I absolutely loved I worked
in some sanctuaries and helped opened up a new elephant sanctuary in Koh Samui in
Thailand but I would love to go to India and spend some time with elephants there and you know more recently I I did a a
shoot for a sort of a mini short documentary on the deafblind community
in Monmouth Oregon right outside of Portland and this is a community that
has developed their own language called pro-tactile and it is it revolves completely around touch
and having that experience was so impactful and meaningful that it made me
wonder what are some ways that I can really challenge myself in developing my
my other senses in developing my sense of touch and develops being my sense of smell my sense of smell is very
heightened I am generally the person that can have this useless skill of calling out any type of perfume or
cologne I smell my brother when I go to his house often asked me to go to his fridge to let him know what's gone bad I
mean it's not necessarily a useful skill but my I think being able to develop my
sense of touch and this is one of the things I loved about working with elephants is being able to touch them
and to be able to connect with them through my through my tactile abilities so I I'm still thinking of what that
might be but the reason why I bring up this deafblind community is that they have what's called a PT house and it's
where they they teach people how to use Pro tactile as communication for
deaf-blind you know people but also for deaf-blind children
and they invited me for dinner and to play games and so I went there and I
thought well everybody else there was culturally deafblind so I decided to take my Cochlear implants off and
without my Cochlear implants on I am completely deaf nobody sleeps better than I do in New York City you could
have a marching band walk and I would sleep soundly I would feel the vibration
but other than that not being able to hear is probably the greatest gift I
have ever been given it is like silence is my religion but so I decided to go to
this house and take my ears off so I would be deafblind with all of these people and experience it myself
being sort of the same boat or the same world and they don't turn the lights on
because why should they it's all based on touch so I got a tour of the entire house
based on touch everything I did I ate tacos all based on touch no vision no hearing
I was communicating with them in this language that I was not only learning but I was having to revert to my tactile
sign language which is a language that's really been given to the deafblind community mostly from the hearing cited
world and it was such an immersive experience and such an incredible
experience that it made me feel like I want to continue to do
really meaningful or you know creative things only using my sense of touch
just I mean just to touch base on that how can you give us an example because I don't really understand how can you
communicate like a sentence with just touch like how does it work
s so sign language is sort of based on uh using airspace so if you have a
deafblind person and they're communicating with one other person one-on-one they can use each other's
hands and feel what that feels like and I I highly recommend you you YouTube it
I can send you videos of me tactile signing so you can see what it looks like but
deafblind people historically if there was more than two people could not have a communal conversation they would rely
on an interpreter and was very isolating it would make them you know feel removed and be removed from conversation and so
part of developing this protactile language is so that multiple people who are deafblind can have a conversation at
the same time and I can also send you a video of what that looks like so that is
it's partially learning that sort of conversational language with more than one deafblind person was really cool but
for example when you sign dog you do your with your right hand or or your
left depending on what if you're left or right-handed you take your hand behind your ear as though you're scratching
behind your ears do or you sign dog
which if you sign very quickly looks like you're snapping for a dog those are two signs that people will
understand if they're deaf but if you're a deafblind person or a deafblind child you don't know you can't see that a dog
scratches their ear and you can't see that dog you know that's sort of an English word so the sign is making
bringing your index and your pinky fingers up and your middle and ring
fingers to your thumb and making the shape of a dog and so they feel that like when you do
Shadows when you're a kid exactly exactly and so even something as simple of that it's so intuitive it makes sense
but so there's a lot of ways in which they use you know they do palm on Palm
which is where you you know if you ask someone what time it is they can say it's 12 30 but as I'm showing you I'm
bringing my hands from one from my wrist as though I'm coming from a watch and
bringing it out into the air and it means that you have to really feel someone's hand it's sort of in this
ambiguous airspace all of the protactile signing revolves around using the body
and people are very uncomfortable with touch we live in a very triggered and traumatized world
and so when I interviewed these deafblind people and I asked them about that what do you say to people who
believe that touch is not something that's appropriate what do you what do
you say to those people and they have a term that they've coined called distancesm where in order to respect other people
we keep distance we we remove ourselves and when you're a deafblind person that
actually doesn't work you need touch you need to be able to orient yourself with your with your surroundings you need to
do the things that make very hearing excited hearing sighted people and even deaf people uncomfortable and
so it's been an interesting lesson in sort of being able to navigate that but
what they've said to me is that usually people who are uncomfortable with touch
have and obviously this is a huge generalization but have issues that they need to focus
on on self-worth and boundaries of being able to develop self-worth and
boundaries of being able to work through whatever that trauma might be so that they can show up in that way and
so it's interesting you know this is this is fascinating I've never heard about that and
right it's always the same I think you know right when you when you live in your bubble you know what you know but
you never know what you don't know and then when you have conversation with people outside of your bubble then you
just discover a whole new world that you had no idea existed with different things and um yeah I mean I obviously
know about sign language but I've never heard about that this is something yeah I will if you send me the videos I will link them in the resources of the videos
so people can can learn about that as well because I think that's very valuable for for everyone
um so we know that you are a disability rights Advocate why is that so important
for you to raise awareness about your own disability but also other people's disabilities well you know so we we live in a very
able-bodied world where things are created historically with people who
have full use of their bodies of their senses in mind and so we're slowly
adjusting and adapting to the fact that maybe not everybody has the same abilities
but one of the things that I think is really meaningful I think that there's a lot of anger and there's a lot of
frustration particularly for marginalized communities understandably so but I also think that the best way to be
able to engender people to get them sort of on board and to understand what it's like to live with a disability is to
educate them the same way that I had to be educated when learning to use a cane
or when coming to terms with and developing these accessibility skills so
that I could navigate my world so much of what I learned was like so cool and interesting to me I'm just grabbing my
cane and to show you for instance
so I I'm bringing out my my blind persons came and I'm unfolding
it for you as you can hear and at the very tip of my cane there's this red reflective tape
and I never knew until I did my cane training that when someone has red reflective tape on the tip of their cane
that is actually indicative of low low vision and not total blindness that when
someone has a white cane that generally indicates total blindness now that's not always the case when you're trying to
get a cane and sometimes all they have is a white cane and you still have some Vision the feeling is you just want to have a cane but I didn't know that and
how interesting that is that seeing the red reflective tape means somebody that they have some usable Vision we don't
know how much or how little but these are all of these little little Snippets of information that I think are so
useful that educate people and that don't come from a place of attacking them for not doing the things that they
need to do to make something more accessible but it's a way of letting them understand why these things are
significant the tip of my cane I have a ball that rolls that using a tip of the
cane That's either a ball or that's either what we call the marshmallow it sort of looks like a little marshmallow
that's a very personal decision each person makes their own choice based on what they find to be the easiest to use
now I love my ball tip cane because I live in a city that has a lot of
unevenly paved streets there's a lot that I have to navigate and I find that the ball keeps me from you know jabbing
myself in the gut as frequently as as I might otherwise but that's something that's you know very personal decision
the other thing is is that the majority of technology is driven by disability
that the advancements in technology like even having Google Maps all of those
things come first and foremost from people with disabilities who can't see and don't know how to navigate so
technology and software has been developed in order to provide them with
the information they need and I don't think people really understand or realize just how much disability drives
innovation and so I also am trying to set up a future for myself that will be
increasingly accessible as my vision and hearing needs change
and most importantly we all in our lifetimes we will all develop a
disability of some sort everyone and so to me in some way it's investing
in your future nobody wants to think about what disability they'll develop or what they
won't be able to do or you know how their needs will change or their abilities will change but it is
inevitable and people hate thinking about and I think what what comes out in
them when they see someone like me using a cane is their own morbidity and mortality is their own discomfort with
knowing how to deal with someone who they perceive they should either pity or
who needs help you know if I'm standing on the street corner and I have my cane
I am likely the last person that someone will go to to ask for directions
and I am also likely the last person someone would look at and say she helps
people for a living she's a psychotherapist because of just these preconceived ideas we have and yet blind
people are oftentimes the most knowledgeable assuming they're in an environment that
they know well but the most knowledgeable in terms of navigation and knowing how to find their way from A to
B yeah no that makes sense actually yeah there's something that you that you said that reminds me of something I've read
on your website because yeah I think as a society when we see oil when we
hear about someone with any sort of disability the the first reaction usually is like oh poor you kind of
reaction like PT and and then there is also like another one is if you're a
disabled person that is doing anything either I don't know like if you're doing
anything of your life it's like oh wow you're such an inspiration very often right and and I mean in some cases okay
like you're coming to Kilimanjaro that's pretty dope like that is pretty cool but I I feel there is something about
disabled people just living the life having a job there is this kind of like oh my God that is amazing and I I don't
know it's not called like inspiration porn or something like that I think Rodrigo said that last thing but yeah
can you tell us a little bit about about that yeah inspiration porn is something that people love it's what drives so
much of social media it's what pulls at people's heart strings it's something that people don't realize really has
some serious connotations but I generally think when people call me an inspiration that they are very well
intended that they that they aren't saying it because they're trying to belittle me or pity me but I also understand that from
a psychoanalytic perspective I remember an analyst that I trained under when we
were discussing calling someone an inspiration calling me an inspiration what you're saying is better you than me
and I had to sit with that meaning I could never do what you do or that you
could do this but I could never do this and it's sort of like saying thank God
you're the one and not me now of course everybody will interpret it differently
but that was very meaningful to me in terms of having to think about it and think about how I felt about that and I
I do think that there's some real truth behind it I think that when you call someone an inspiration oftentimes it
suggests that your beliefs in what they're capable of is limited
and so when they do accomplish things you're making assumption yeah you're making assumptions you're assuming that
because they use a wheelchair that they're Limited or that they wouldn't be able to
climb a mountain now of course the way that you climb a mountain and someone who uses a wheelchair climbs mountain is
quite different but I I think that the other thing you know the reason why we don't use
terminology like wheelchair bound or confined to a wheelchair is because that
suggests that this person is defined by their wheelchair that if it were not for
their wheelchair they would not be able to live and yet people who use wheelchairs see that as their way of
maintaining their autonomy their independence that's their their legs so to speak that's how they navigate the
world that's how they get around that's how they're able to live fulfilling lives and so when we we suggest that
these are things that they're confined to we are also suggesting that they're Limited
and so it's those limiting beliefs that we have to adjust you know when we say that someone has a disability and that
they can't access certain information it's actually not their disability that is a limitation it is the structural the
technological and the environmental limitations that keep them from being
able to access that information and so that's another reason why educating the
public is so important yes someone may access information physical spaces technology in a different way than you
do but the way that you do it is not the only way that it can be accessed or
provided hmm and not it is important yeah and uh ultimately is going to
require a lot of education and a lot of like political changes to create a society
that is accessible to everyone or the majority of population because but yeah but I think education
is keys and I think education is the answer to a lot of the problem in the world anyway
um talking about disability if you talk about racism and stuff like that education I just educate people talk
talk talk talk that's the best thing you can probably do to solve 99 of the
problem in the world I think anyway well sorry go ahead
I us because I think it's similar as well to what you're saying about you know somebody using wheelchair like oh poor them well actually you know it's
amazing because it means that they can be autonomous and get around and do their own thing I guess it's similar with the cochlear implantness that
people are like oh poor her she's got an in you know cultural implant actually it's like no it's amazing it means I can
hear again and like it's rather than kind of make it like a bad thing actually we'll celebrate that thing because it means that you can do so much
more and kind of give you more Independence back so it's kind of like you know a celebration rather than like
an old poor them kind of thing yeah and so you know I think that even looking at someone who uses a wheelchair
is not amazing they can maintain their autonomy and Independence yes it's it's great that we have the ability but it
just is that's just how they navigate it's not either amazing nor not amazing
it just is and I think when we create this differential of here are the people
who are really doing things and putting themselves out there and challenging themselves or living with these
challenges that somehow that puts them in a different category that is a way of
othering and so I know that it's impossible for us not to do that but it
is something that's worth thinking about now as far as the Cochlear implants are concerned you know again this is a whole
other podcast the deaf Community is a very strong there's a capital D deaf
Community there's a lower the deaf community and so Cochlear
implants really threaten the capital D Community the people who are culturally deaf and it is a very rich and vibrant
culture there are there's nothing I love more than being able to to communicate
with my deaf friends they are so straightforward there's a lack of pretense that I find in the hearing
cited world or in the hearing world that is just doesn't exist in the deaf world
and it can be very off-putting I think sometimes for hearing people when they interact maybe with deaf people because
the lack of pretents or superficiality like Hi how are you let's grab lunch
you're never gonna grab lunch with this person you're just saying that because it's sort of you know an easy way to get
going and not have to talk to this person but those are the kinds of nuances that you might not see with uh within the
deaf community and I remember a time when I was working at the school for the deaf um in Brooklyn some years ago this
was like 2008 I think and I was walking down the hallway with another teacher and we saw one of the other teachers
she'd been out for a while because her husband had passed away and she was finally back and so we just had a
conversation with her and said you know how are you doing and this colleague of mine the teacher asked her if she said
you know how are you feeling now you look like you and for the audience who can't see me I
am puffing out my my cheeks and I'm bringing my hands out from my body in a way that suggests that I've gained
weight that I'm that I'm overweight and I thought to myself oh my God this
is not going to go well like she basically asked this woman hey you look fat what happened and in that moment what she said was yes
you know I'm I'm feeling better now I'm making progress but I was eating
emotionally for a long time so I'm just happy to be back at school now where I can you know interact with my friends
and you know do all of the things that make me feel like needed and important
and hello I mean if everybody communicated like that I would be out of a job as a
psychotherapist yeah yeah that's true I mean it wasn't she wasn't judging her she wasn't saying hey what happened you
got that she was genuinely concerned hey you look like you've gained weight are
you okay you know what and obviously you know this was so it was just a very
eye-opening no pun intended experience but it was just a way of kind of conveying the type of direct
straightforward way in which you know communication within the deaf Community happens that I think is so worthwhile
and so getting cochlear implanted for someone like me I was an ideal candidate
I was raised in a hearing family I knew how to hear sound so that when I had to
relearn how to hear digitally I could do that much more easily than someone who
did not have as much hearing as I've had growing up and a deaf person can't just be implanted and learned how to hear
it's an auditory skill that you must develop at a very young age
yeah I have a question so I know that you obviously the sign language
Braille and I've forgotten the one where you said tactile there's three languages yeah
have your family and friends or will your family and friends learn this because you said you came from a hearing
family is that something they have learned so that as your needs change they can still
communicate with you because obviously it's not just about learning sign language because if your site changes as well there's kind of two
things there so is that something that your family and friends who are cited and hearing are doing to support you
oh Rosie I my family and friends have tried for
a long time not as consistently as you know when it's just like any language you need to be immersed in it you need
to be exposed to it daily or you need to practice it regularly and so during covid we you know would do it one time a
week I had a tutor for them and they would do it on zoom and it was sort of like a social you know experience but it
was also a way for them to learn sign language but you know my family like most of them live in California I have a
sister and her girlfriend and they live in Brooklyn my brothers and you know Virginia whatever and so and my
boyfriend has a master's in financial mathematics which is a way of saying language is not his strong suit so yeah
so the answer is that they've tried some of them can fingerspell but it it it is
you know I want to say that it's disappointing because it is disappointing that I can't communicate with them that I have to join their
world when I want to interact with them but I also understand it I also understand
that this development of my disabilities happened later on it wasn't when I was
growing up as much at home and so while it's disappointing it's also understandable and I don't begrudge them
for it no yeah yeah thank you Rebecca for this awesome conversation I feel we
need to have you back on the podcast because there's so many things we could be talking about to be honest uh and and
it could be as we have this conversation but uh no yeah thank you for your time and thank you for just yeah like we said
a few times educating us on a topic it was really really cool I got one last question before we actually wrap it up
it's a a question that we asked everybody in the podcast if you could have a conversation with
anybody Dead or Alive famous or not who you think would be the most interesting person to talk to who would you pick and
why and don't ever think it just first thing coming to your mind I know so the first person that comes to mind is
Martin Luther King because he was a visionary and so I think Visionaries are the ones
that I this woman Elisa nuccio who started the protactile language and
movement really she is a Visionary and every time I'm with her learning Pro tactile the communicating with her I
feel like I am enlightened so listen Martin Luther King's the first
person who comes to mind but there there are so many people that I would love to
have conversations with uh but that that's the first person who comes to mind and given the the length of time
that we have here other people I think of might might take some time yeah yeah
no for sure awesome thank you thank you so much um I will link your your website and
your contact in the show notes so people can reach out to you can get your book and and see everything that you're doing
your Instagram account as well you share a lot of tips on your Instagram like Duquesne and stuff like that so you yeah
I'll make sure people follow you to again get educated on a topic but yeah thank you so much Rebecca it was a
pleasure to have you on the show today yeah thank you for having me I mean it's so nice to be able to have open conversation about this stuff and I
really appreciate your curiosity yeah thank you so much for sharing everything
um thank you for everybody watching on YouTube make sure you subscribe and give us a thumbs up leave a comment if you enjoyed this episode everybody listening
thank you as well we'll be back next Wednesday with a brand new episode bye
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