FSCast #244

April,  2024

GLEN GORDON:  On FSCast 244, I’m joined by Ana Gonzalez Arean.  We’ll hear about growing up in Venezuela and becoming a language professor, and then needing to move to Spain to start a new life for herself.  Then, Cathy Miller and Nicky Gillies from the Louisiana Deafblind Project talk about some of the challenges of identifying deafblind kids young and helping them to achieve their potential. 

Hello, everybody.  Glen Gordon here.  Thanks for joining me for the April 2024 edition of our podcast.  Many of you have sent in some great stories about the innovative uses you found for Picture Smart AI.  And as luck would have it, this past week Picture Smart helped me out of a really confusing situation.  I had to go out and buy a new WiFi router because my old one died in the midst of a Teams meeting.  And when I got the router home, I went into the web UI to set it up.  The UI was generally accessible, but buttons weren’t labeled as buttons, and the text of the various button names got run together in a line.

Now, for the most part I was able to ascertain which button was which, move the JAWS cursor to the text of the button, do a left click, and life went on.  But there was one really confusing situation where the router said, “You really should update to this latest firmware.”  It showed the firmware version, and then it said, “Cancel firmware update.”  I assumed that “Cancel firmware update” meant that the update was automatically happening, and I would have to do something to cancel it.  But I waited and waited and waited, only to find that nothing had happened.

And so in desperation I did Picture Smart AI on the window.  And it told me, of course, “This is a router setup screen.”  But it said, “There are two buttons at the bottom, Cancel and Firmware Update.”  So I thought it was one button, but in reality it was two.  I went over to Firmware Update, did a left click, and everything proceeded as expected.  So it’s probably a good tip to keep in the back of your mind.  If you’re confused by a webpage or other screen, let Picture Smart AI have a shot at it.  It may give you a tip about something that you’ve not really considered.

Interview with Ana Gonzalez Arean

GLEN:   Joining me now is someone who I never would have met had it not been for Oleg Shevkun, who’s on our testing team and knows Ana Gonzalez Arean from a braille advocacy group that they’re both part of.  He told me a little bit about her story, and I said immediately she would be a great guest for FSCast.  And even better, she has agreed to be here.  Ana, thanks for joining me.

ANA GONZALEZ AREAN:  Thanks.  It’s my pleasure.  I mean, it’s an honor to have been invited.  And I thank Oleg, my colleague and friend, for telling you about me.  I hope I’m not disappointing you, right, because maybe I don’t have much to say.  So I hope you like it.

GLEN:  I have no doubt.  So you were born and grew up in Venezuela; correct?

ANA:  Sure, yes.

GLEN:  And you were born blind?

ANA:  I was, yeah, because my mom had smallpox, and it affected me.  It affected me during pregnancy.  It affected my retina and my macula.  So I was born blind for that reason.

GLEN:  And this was late ‘60s.

ANA:  Yes.  Smallpox was quite common.  So it’s not like now, that you have a vaccine, and it has been nearly eradicated.

GLEN:  My guess is that your parents were not expecting to have a blind child.  How did that go?

ANA:  It went really catastrophic.  Like my father, he didn’t know what disability was.  And he’s from Galicia, so he was an immigrant into Venezuela trying to find a better future.  So for him it was really sort of a disgrace.  Quite on the contrary, my mom is like, was like really impulsive and pushy, and she wanted to succeed in everything she did.  And although she didn’t study that much, she took it in her hands to make me study, to make me grow up happily.  And then my father, little by little, started understanding that a disability is, of course, not a disgrace, quite on the contrary.

GLEN:  And were there services in Venezuela?  I mean, what was sort of society’s view of blind people at the time?

ANA:  Well, at the time it was – there were not many services.  My mom was looking for, like, the best place.  So she only found, like, two special schools.  One of them was public.  And although it was quite good, she didn’t like it that much.  And then she went into a private one led by nuns, Catholic nuns, and this is where I studied.  It was a small school, but then later it became like the best school in Venezuela for blind people because then it started integrating or including students from the community.  I mean, sighted students into a blind school.  So it was very interesting.

GLEN:  And was that true when you were going there?

ANA:  Not really when I was going there.  It was true when I started working there as an English teacher after I graduated, of course, from university.  And by then it became this integration school.   But it was like integration the other way around because it was sighted people integrated into a blind school environment.

GLEN:  Wow.

ANA:  And so it was very interesting.  Yeah, and it got a lot of resources, many of them from ONCE and, I mean, donations and everything.  So it got to be like a top school, you know.

GLEN:  So in the years that you were going to that school, how prepared were the nuns to teach things like braille and other blindness-specific skills?

ANA:  They hired teachers who knew, I mean, basically blind teachers for the areas of braille and stuff.  And we got a good preparation.  We got, yeah, we really learned a lot.  Although the school didn’t have the resources yet to become like this advanced school.  It was very little.  But we really got into learning braille and all the areas of knowledge like, you know, science and arts and everything; and, you know, math and gymnastics and sports and, you know, whatever.  So it was like we really had a good education in that respect.

GLEN:  Was it all girls at the time, or was it integrated?

ANA:  Yeah, it was.  So it was really boring.  It was like, and we were, like, four in each class.  You can imagine the big change when you get to university, like so huge and with so many people around.  So even if I had a, like my weekends were full of sighted people, I had never studied with sighted people.  It was like a big, big, you know, huge change.

GLEN:  Looking back on it now, do you feel like you were confident at that time?

ANA:  Well, the thing is I was raised in an environment in which all of my friends were sighted.  So I started feeling like, you know, quite equal to them.  Although I also, I was in a boarding school at the same time.  So I was like, from Monday to Friday, I was with my blind friends.  And then on weekends I was with my sighted friends, you know, going to parties and doing sports and, you know, leading quite a happy life.  So I didn’t feel bad.  Although of course, you know, when you start going out with boys and stuff, you start realizing like, man, are people going to accept me and every – I mean, you question yourself.  But then I felt quite good.

GLEN:  What got you to decide that you both could go to college and that you were interested in college?  Is this something that your family did historically, or were you one of the first?

ANA:  I think it was a combination of several things.  I think I was a good student, on the one hand.  And then my parents had very high standards of their sons and daughters being educated and everything.  However, when I said I want to study modern languages, my sort of chauvinistic father, he would say, “Well, I mean, what are you going to do with that?  You should better stay home washing the dishes.”  He said that literally to me.  But I said, okay, this is what I want.  And then my mother sort of forced him.  She said, “Not only she is going, but you’re going to pay for her studies.”  I mean, like, she forced him to help me get there.  And I did.  I mean, I took advantage of the opportunity.

GLEN:  Where was technology at this point?  I’m thinking you entered college in the early 1980s.  Am I about right?

ANA:  Exactly.  I had a typewriter that was very heavy, you know, the very old ones.  And so I took it to the university, and I had to carry that machine for all the exams and everything.  And then I had to pay someone to record all the books for me.  So it was really expensive because not only I had to pay for my studies, but also I had to pay for my books being taped.  So that was how technology was.  Teachers didn’t know anything about having a blind student.  Even though most of my teachers were American and British, they didn’t know.  I mean, like, so I had to tell them.  But they were really receptive.  They were really good.  And so I really had a good time, and also with my classmates and everything.

GLEN:  So when you said you carried a typewriter, was this a regular print typewriter, or was this a braille typewriter?

ANA:  No, a print typewriter because then I, for braille, I took my slate and stylus, you know, that’s what I took to take my noting, and my tape recorder.  I took notes with my tape recorder and everything.  And then I took my print typewriter to take my exams and to do the exercises so that the teacher could see them; you see?

GLEN:  I had problems with the print typewriter taking exams in the following way:  If I had to write long answers to questions and I couldn’t first write them in braille, I sometimes forgot what I had written, and I had no way of going back.  Did you do your exams that way, or how did you do it?

ANA:  I wouldn’t have time to do it in braille and then pass it to print.  So I did it directly, but I had exactly the same problem as you had.  So then I forgot what I had written.  And the thing is, you cannot tell friends to read what you wrote because then the teacher would say that he or she is cheating.

GLEN:  Yes.

ANA:  So I would, yeah, that was, of course, a limitation.  And I had to have a very good memory and pay a lot of attention.  And I am sure that, you know, maybe I would repeat words or omit words without knowing because I didn’t have time to check.

GLEN:  How was language learning for you?  Were there challenges that your contemporaries didn’t have when it came to learning English and other languages?

ANA:  It was a true challenge.  I mean, I always liked English very much, and we also learned French.  But it took many more hours for me:  transcribing, getting into orthography, listening to the tapes of the people who recorded the books for me while my friends were at the movies or at the disco.  I also went there; but I, you know, it was like more limited.  It’s a matter of fighting and doing it every day and having a lot of discipline, I would say.

GLEN:  How about learning mobility skills and travel skills?  Did you learn those early on?

ANA:  I learned those quite late when I was 22 or 23 because, when I went to university, there was no bus available.  You know, university was quite far.  So my mom had to drive me to college, and then my boyfriend had to pick me up.  So I was quite limited in that respect until I was – until, you know, one day when I started working, I said, “Come on, now I’m going to start, even if my mom gets scared.”  There was this very good teacher of orientation and mobility, and she taught me how.  But the first day I went into the street, I did it on my own, and I did it out of anger.  I said, “I’m going to do it.  I have to do it.”  And then I went to her, and she taught me.

GLEN:  That’s probably good.  It probably means you lived longer.

ANA:  Yeah.

GLEN:  Was it obvious to you when you were in college that you would likely go work for this school?  Or did that come about a bit later?

ANA:  I was afraid I would not be able to work in the world of sighted people, which came later because I worked at two universities later.  But my first job was there in that school.  You know, they saw me, they saw, they realized that I was graduating.  Even before I graduated, I was on my thesis when they hired me because they needed a teacher.  So it was not – a I didn’t have any idea that I was going to work there.

GLEN:  Were you surprised by anything working at the school?  Like, did you see the world from sort of the opposite side, and notice things that you didn’t notice when you were a student?

ANA:  Totally.  Yeah, totally.  I mean, I realized how naive I was when I was a student, and how much I wanted my blind students to be protagonists, to go ahead.  Yeah, yeah, it’s a change of paradigm.  As you said, you see things now from a different perspective, and you feel responsible for them.

GLEN:  Do you know why that school chose to bring sighted students in?  I mean, that’s a very forward-thinking thing to do.

ANA:  This nun was like really always going against the grain.  I mean, she had these avant-garde ideas, and she said she would like to help the people from the barrio because they were quite poor.  I mean, the people who lived there in the surroundings, they needed assistance.  So she said, okay, we are going – and so she started creating the project.  And then she died.  Immediately after she started, like, integration with inclusion, she died.  But it was because of that.

GLEN:  Wow.  So one person really can make a difference.

ANA:  Yeah, yeah, yeah.  I mean, she was really different.  She was really, really avant-garde.  Yes, she was.  Like looking for donations, when people said, “No, I’m sorry,” and when enterprises said, “No, we are not donating,” and they shut the door to her, she knocked again.  “Hey, here we are again, so we need....”  And, you know, she was, like, really stubborn, and she really cared for blind people.

GLEN:  Did you start integrating young kids from the community?  Because my experience is that young kids are just curious about blind people, and maybe they formed some good friendships.

ANA:  We started integration in high school first.

GLEN:  Ah.

ANA:  So in high school, of course, they have marked in their minds that they are different.  It was a school that had a very good level of education, and you didn’t have to pay much.  So it was like, it was a big chance.  So they took advantage of saying, you know, the first day we had an interview with them, “No, you know, that I’ve always liked blind kids.”  But in the end, you know, so.  But some of them got to be really included.  But the rest of them just studied there, and then they left and that’s it.

GLEN:  Was it difficult being hired outside of the blindness world?

ANA:  Yes, it was.  At the beginning, there wasn’t – you know, because of course there is a lot of ignorance.  I ended up working in the same university where I did my undergraduate studies; but, you know, same story.  They needed a literature teacher.  I was finishing my master’s degree, and I started working there.  They hired me with no problem.  But I also wanted to go into public university that was very good.  And they also had this modern languages school.  At the beginning, they said, “No, sorry, we don’t have the means to hire you.”  Then they ended up hiring me later; you know?  When they had the technology, when they had the computers, when they had JAWS and everything, they said, “Okay, now we can.”  But at the beginning they said no.

And not only – I went to many private academies for teaching English, and they didn’t believe you could do it.  I remember one day I told the directors of one of these academies, “Why don’t you put me to the test?  Why don’t you let me work and show you?”  And he answered, “No, because then I don’t want to have to kick you out afterwards.  So I would better dismiss you all at once.”  Like, even if my exam had been very good, like he said, “No, no, I mean, and I prefer not to try.”  So it was like really tough at the beginning.  It’s really difficult, like, to compete with your sighted colleagues.

GLEN:  When did you decide to move to Spain?

ANA:  Well, it was something I didn’t quite decide.  The thing is that my country got politically complicated.  It used to be a very prosperous country.  It’s one of the best, you know, top countries in Latin America.  And then, as you have probably heard, there was this new regime that practically deprived us of everything.  By the time I came, we couldn’t find food.

GLEN:  Oh, my god.

ANA:  Yeah, we made these big lines of people waiting for food to come.  It was like really dystopian; you know?  But even if it was like that, I didn’t want to leave my country because I had two jobs in these two spectacular universities that it had been so difficult for me to get those jobs, as we said before.  Like when they trusted me, and I was, like, comfortable, earning not a lot of money but, you know, living a good life, then all of a sudden hyperinflation took everything away from us.  Like one day we woke up and what we earned was not even enough to go shopping like to the supermarket one day.

So I was lucky enough to get somebody donated a plane ticket to me.  I mean, somebody that I didn’t know.  I mean, I didn’t ask for it.  I had a friend here in Madrid that had been my colleague before, and she came first.  So this friend told another friend that a friend of hers wanted to come, but she didn’t have the money because we were left without money, literally.  So I was donated this plane ticket, and I came.  And I came, like, I didn’t want to come, not because I didn’t want to be in Spain, but I had the hope that things were going to change.  You know, this stubborn idea that things cannot be so bad for so long.  But then at the end, I realized that I had to come.  There was no other way out.

GLEN:  And this was when, about?

ANA:  Six years ago, in 2018.

GLEN:  Was your family still in Venezuela?

ANA:  Little by little, after the situation began to complicate, all of us returned, you see.  But the whole family is in Galicia, and I am the only one in Madrid.

GLEN:  I’ve often thought about, with a certain amount of dread, the prospect of moving to another country where I didn’t have a whole lot of friends and a good support network.  How did that work out for you?

ANA:  I don’t know.  It’s like when you see it retrospectively, it’s like beginning again, sort of being born again to something new, even though it’s the same culture.  It’s a similar culture; it’s the same language; it’s your parents’ country and everything.  But it’s like you say, I mean, you know no one.  And I have a friend who helped me at the beginning.  I was in her house for about six months.  And she said, “Forget about everything you think you know.  No matter what you studied, no matter what you did, here you are no one.  Here you are nothing.”  She was really hard when she talked to me, but she was right.

So you have to start again, making yourself a reputation, a new life.  You know, people have to trust you again.  It’s like beginning again, you see, from scratch.  And not because you want it, but because you had to.  When I was 25, me and my boyfriend were about to immigrate to Australia, but they wanted people who had children, and we didn’t want to have children yet so we didn’t qualify.  But then when you immigrate without wanting, it’s a different story; you know?

GLEN:  Yes.  How different is the Spanish language between the Americas and Spain?

ANA:  It’s total – it’s like another language, believe me.  I mean, words are so different that sometimes people do not understand you, or they misunderstand you because words have another meaning.  They use more like the present perfect, for example, than the simple present.  And then words have, yeah, other connotations.  So you have to start using the words they use so that they can understand you.  Even when my accent is still Venezuelan, but the words I use are, like, have to be the words that people use here.  It’s really fun.  At the beginning, you feel like, again, like awkward.  Like you turn on the TV, and you don’t understand the TV.  I mean, you hear it so fast and so different.  So, but of course it’s the same language in the end.

GLEN:  And how easy was it finding a job?

ANA:  When I came, I started looking for a job, and I got one teaching English at a public place.  It was a place where public officers worked, and I taught them English, but only it was some hours a week.  And then at the same time I started working as a waitress.  You know, there is this restaurant.  I don’t know if you have heard of a restaurant in Madrid that is called Dans le Noir.  It’s a French restaurant where people eat in the darkness.  You cannot even take your phone or anything.  Like there is no light, and all waiters and waitresses are blind.

GLEN:  What were sort of the details of being a waiter?

ANA:  The way you feel is that these people do not know where they are.  They cannot see at all.  So you have to show them where their seats are.  You have to help them with the dishes, with the cups and everything.  So they depend totally on you.  And so it’s like, it’s interesting.  It’s like a reversal of roles because you are blind, and you are the one in charge.  No?

GLEN:  Yeah.

ANA:  And so, of course, you don’t have to serve the dishes.  The dishes are already served.  So what you have to do is take them, carry them to the table and put them exactly in the place without making any mess; without, you know, like it’s a big challenge.  And you have to be very kind.  And you have to make them laugh because they are scared.  They cannot see.  They don’t know how to eat in the dark.  They get dirty.  They get stained.  You know, they don’t know how to eat.

GLEN:  Yes.

ANA:  So you have to, like, it’s a very interesting thing.  And so, I mean, but of course it’s not very well paid.  So of course I left it.  And then I started applying for something that resembled a little bit more what I wanted; no?  So I applied for this position that I have now as a member of the technical staff in ONCE.

GLEN:  And ONCE, of course, is the big blindness organization in Spain.  What exactly do you do for them?

ANA:  I work in the area of braille.  So what I do is, first of all, I have to coordinate a team of teachers who specialize themselves in teaching braille to adults.  There is one in each province of the country.  And then I also represent ONCE in two technical groups.  One of them is my European Blind Union Group.  This is where I met Oleg.  We always have projects to spread braille, to make people know braille.  And so it’s a very interesting thing at a European level.  And then I have another international group, which is a similar thing to my European Blind Union Group, but in the area of Spain, Portugal, and Latin America.

GLEN:  How easy was it for you to make friends once you moved to Spain?

ANA:  Not that easy.  I think it’s – I am still in process.  I already have a couple of very good friends, sincerely good friends.  But, you know, people’s mentality is different sometimes.  Like, for example, when I’m, like, at work, I always have breakfast.  You know, there is this tradition here that everybody goes out for breakfast, people together, like in groups; you know?  And usually nobody invited me in those groups.  And I said, “My god, do I smell bad?  Am I Venezuelan?  Is that why?”

But then little by little people start recognizing you as a person because, at the beginning, they only see you as a foreign person.  And even if they don’t discriminate openly, they see you like you come from abroad.  So now little by little, they start recognizing you as an individual, not as a Venezuelan, but as a person, you know, in this case.

GLEN:  Ana, thank you very much for being here.  Oleg, if anything, understated just how interesting you could be.  So thank you, thank you very much.

ANA:  Well, thanks a million for the opportunity.  I hope we can keep in touch.  And when I see Oleg, I’m going to tell him that it was a wonderful experience.

The Deafblind Experience

GLEN:  With me now is Nicky Gillies, Director of the Louisiana Deafblind Project; and Cathy Miller, who’s Family Engagement Coordinator.  She is also deafblind.  And we’re going to talk about something that I know almost nothing about, and that is the deafblind experience and, in particular, some of the challenges of identifying deafblind kids when they’re really young and getting them the necessary services they need to really thrive.  This is a topic that I’ve had a long-time interest in, and am delighted that the two of you could be here.  Welcome.

NICKY GILLIES:  Thank you, it’s great to be here.

CATHY MILLER:  Sounds good.

GLEN:  I want to start out in probably an unlikely spot, and that is with the word “deafblind” because I’ve seen it written both ways, one with deaf-blind, and the other, which I think may be the more modern one, which is deafblind all run together.  Is that distinction significant?

CATHY:  Actually, it is, yes.  It’s been spelled many ways.  The most modern is with a capital D and a capital B.  Bringing the two words together symbolizes the fact that deafblind is not blind, it’s not deaf, and it’s more than the sum of its parts.  Accommodation for deafness typically involves visual cues.  Accommodations for blindness typically involves auditory cues.  And deafblindness, you lose both.  And so accommodation, they all involve human intervention.  Those human interventions have been around for just maybe, what do you say, Nicky, maybe 20 years or so?  Deafblindness itself is so rare that word doesn’t get around quite as fast.  We’ve actually got something in Congress right now to provide qualified personnel in the school systems because right now in the school systems deafblind people are not being accommodated.  So to answer your question, yes, drawing the two words together is very significant.

GLEN:  I think I’ve been very unimaginative about sort of the range of deafblindness because I went to elementary school with someone who was totally blind and totally deaf.  And it never occurred to me, even though I’m quite aware of the range of blindness, that there is a broad range of deafblindness.

NICKY:  Yes, absolutely.  There is a very large range of people who identify as deafblind.  And many of the kids we work with do have some hearing and/or some vision that they use.  But because, as Cathy said, deafblindness is really its own category and its own experience of the world, that broad range can all sort of be considered deafblind.  And so in addition to a range of hearing and vision levels, people have a wide range of assistive technology they may use, of communication preferences, and just different ways of moving through the world.  A lot of the children we work with also have intellectual or developmental disabilities.  About 90% of the children that are represented in the national census of students who are deafblind do have multiple other disabilities beyond deafblindness.  And so it’s a very diverse population of children.  And if we’re talking about deafblind people at large, including adults, it’s a very diverse population of adults, as well, that may identify as deafblind.

GLEN:  Why is it inappropriate to say that the kinds of services and accommodations that someone who is deafblind need is not simply the sum of the services that a blind person would need and the services that a deaf person would need?

CATHY:  Anytime you add services that a blind person needs, there’s a good chance that those services won’t work because the person is deaf and vice versa.  A large portion of the services that a deafblind person needs is going to be tactile.  Deafblind people often use ASL like deaf people do, but oftentimes there is no field of vision, and so communication needs to be done in the hands.  If I place my hands over yours, and you’re signing, with a lot of practice I can read your signs, and I can communicate with you.  So it’s not deaf plus blind.  It’s deaf times blind.

GLEN:  But how do you start?  There are fewer things to use, I would think, to try to help people make the link between signs and what they mean.

NICKY:  I do think it really depends if someone is learning tactile American Sign Language.  It depends on, you know, whether they have learned it using their sight and are losing their sight, so they’re transitioning to tactile, or if they have always been fully deafblind and are learning it through touch.  So for different people, that path will look really different, but I think you’re right that, if we’re just looking at using your sense of touch, that is a close sense; right?  We can feel what and who are close to us.

And so with students, we see that they are missing a tremendous amount of incidental learning that, you know, hearing and sighted students just pick up without being taught directly.  And so with a student who is deafblind, they need the world brought into them.  They need experiential learning that they can touch and feel and engage with to build concepts of the world and, as you say, to build language and to build an understanding of what language represents.

CATHY:  And that’s why it’s so important to identify infants as soon as possible, because babies learn to communicate at the same time in their lives.  And so if we’re using tactile communication to communicate with infants, there’s no good reason that they can’t communicate at the same time as other infants do.  And their communication can build upon what they learn at the earliest ages.  And they can be fully communicating by the time they reach school age.  We need a common language, and we need early identification.

Here in Louisiana, where we have the second largest population of deafblind people in the world, there are a lot of people who are born deaf, but they lose their eyesight gradually throughout their lives.  These are people with Usher syndrome, and they live in a community of deaf people.  And typically they continue to sign and receive signs visually in a more narrow field.  And then they switch to tactile signing.

I have Usher syndrome, and the exact opposite was true.  I began losing my vision first and then my hearing.  And so it was not discovered that I was losing my hearing until much, much later.  I began learning about the blind community when I was 17, but it was much later that I learned about the deafblind community.  I worked.  I had a career.  And as I began losing my hearing, it was quite traumatic, and I had to leave my job.

I eventually found the Louisiana Career Center for Deaf and Deafblind, where I learned sign language in a totally immersive environment, several months, almost a year.  All my teachers were deaf.  And so I had no exposure practically to auditory communication.  And that was truly probably one of the most important things that I did in my entire life.  And it opened up a whole community of deafblind people.  I say all the time they saved my life.

GLEN:  You touched on the topic of early intervention.  Is there the possibility that early intervention is hard because deafblindness is confused with other things?

NICKY:  Yes, absolutely.  I think a big part of the issue we face is that deafblindness is not always identified as part of a child’s, you know, part of who a child is or what they’re dealing with, in part because it can be hard to test, especially vision, but sometimes also hearing in young children, especially if they do have some use of their vision.  It might not be apparent how much they’re missing.  And also in part because some kids who are deafblind become deafblind due to complex genetic syndromes or, you know, medical issues, medical traumas that cause a lot of other things, too.

And so sometimes, you know, the family and the early intervention providers are focused on the most basic, you know, human needs of breathing and rolling over and just staying healthy and gaining weight and thriving for little ones that the question of what is their sensory experience of the world comes kind of later.  But even when it’s hard, it’s so important because we need to understand how that child experiences the world in order to help them learn.  So part of our challenge in working with families with young children is just to help the families and the early intervention providers recognize when deafblindness is present and when a child is deafblind; and then adapt, you know, the types of early intervention supports to be appropriate for a child who is deafblind so that they can access that.

GLEN:  Cathy, you are officially a family/parent advocate for kids who are deafblind; is that correct?

CATHY:  Yes, my title with the Deafblind Project is Family Engagement Coordinator.  I meet with parents all over the state, and I find out what their needs are.  I find out how interested they are in meeting other families with deafblind children and forming community, to meet with each other and to learn from each other.  Parents learn they have a deafblind child, and they don’t know what to do with this child, but they learn from other parents.  “Here’s what I did in this situation.  What did you do?”  And it’s so important for that to happen and form community.

GLEN:  One of you mentioned the whole concept of incidental learning.  Can you define what that is and how it works, or in some cases doesn’t work well?

CATHY:  If I drop my pencil, and I’m blind, directional hearing will allow me to estimate where on the floor that pencil fell.  That’s incidental learning.  I didn’t watch it fall, but I heard incidentally where it fell.  If I’m deaf, I’ll see where it fell.  That’s another example.  But if I’m deafblind, the moment that pencil leaves my hand, it’s gone.  Nicky, do you have something to add?

NICKY:  Sure.  I would define incidental learning as everything we learn day in and day out that is not intentionally taught, or that is not planned learning.  So the things that children overhear their parents talking about, the visual cues that give someone an idea of what’s happening next.  For example, seeing someone come to the door of their classroom to talk to their teacher, that might be a cue that something’s about to change in the classroom; or hearing and seeing the dog run to the door when their parent gets home because the dog knows that they’ve pulled into the driveway before the humans do.  Just all the kind of visual and auditory information that our brains are, you know, as a sighted hearing person that my brain is processing every day, I’m not necessarily sitting down and being taught that information.

And children are just little sponges.  They’re constantly processing the information they’re getting and making meaning out of that.  And so when a child is deafblind, they have less access to that unplanned learning.  They might not know that there are cues that precede, you know, their parent coming home from work at the end of the day.  They may not learn what types of stuff do their classmates talk about in the back of class.  If, you know, someone is getting reprimanded by the teacher for their behavior, what was that behavior, and what does that reprimand look like?  You know, they might be missing a lot of that information, which makes it confusing to move through the world.

And it also makes it confusing to build anticipation of what’s happening next, to build a sense of understanding the connections between things, especially if we’re thinking about young children.  And so sometimes that limited access to incidental learning can cause a lot of anxiety.  That’s not to say that kids who are deafblind can’t learn all that information.  It just needs to be presented to them in a different and more intentional way because they’re not necessarily going to be able to pick up the sensory information that gives them that learning on its own.

GLEN:  If you don’t have incidental learning, does your lack of ability to pick up on some of these things if you’re deafblind cause others to think that you are less intelligent than you really are because you have no compensating skills in that regard?

CATHY:  Well, that is definitely my growing up experience.  In fact, as I work through the school systems in Louisiana, I’m seeing deafblind children right now who are in special education classes, and who are not learning braille, for example, because the decision-makers think that braille is difficult, and they’re not capable of learning braille.  These children deserve braille.  They deserve every compensation, every accommodation that they can get.  And we can’t just assume that they’re not smart enough to learn braille.  We have to make assumptions that provide the most benefit to the child and act on those assumptions.

GLEN:  And if you don’t try, you’ll never know if you underestimate it.

CATHY:  Yeah, that’s true.  At least for all the cases that I’m imagining right now.  Yeah, it’s true.

GLEN:  I realize that the needs of deafblind students can vary widely, but if you have a student who could benefit from a lot of one-on-one attention, is there sort of a tension between the school district and what they’re able to financially and otherwise provide and what the student ideally needs?

NICKY:  The amount of support, and one-on-one support specifically, that a student who is deafblind needs does really vary.  Just being deafblind doesn’t necessarily mean that each, you know, each deafblind student doesn’t necessarily need an intervener.  That’s a better way to say that.  So it’s necessary to look at that student’s communication abilities, their other disabilities they might have, their, you know, sensory experience of the world and what accommodations and modifications they need, how they communicate, all these things kind of play a part in deciding how much support someone might need to navigate their day and their education.

Many deafblind students do benefit from having someone who’s working with them one-on-one who is trained in working with a student who is deafblind and can bring those skills, instead of just doing things for them.  And so, yes, I think there is a real tension between what is ideal and what is actually happening on the ground, absolutely.  And that is partly about funding; that’s partly about training; that’s partly about family support, you know.  It’s really a complex set of challenges that we look at in figuring out what is ideal for a student who is deafblind and how to support a school district in implementing that.  I don’t know if you want to add, Cathy.

CATHY:  Some very simple modifications, especially in the rural areas, many teachers don’t realize that there are some things they should be doing.  If there’s a picture on a projector in front of the room with some text, and the children in the classroom are supposed to be reading the text, what the teacher can be doing to accommodate the deafblind child is simply reading the text aloud to the whole classroom.  But that teacher may not realize that.  That’s the level of simplicity that can be used as an accommodation for a deafblind child, and all the way up to a trained intervener.

Now, training as an intervener for a child who really needs it, it goes beyond the training that a typical paraprofessional obtains.  And if you expect a professional go through additional training, there’s got to be a reward, compensation, monetary compensation at the end of that training to motivate the person to get that training.  Right now we have no system in Louisiana to provide that motivation for paraprofessionals or others to obtain the training they need.

GLEN:  Does this mean there’s a shortage of paraprofessionals with this training?

CATHY:  Yes.  We have one, maybe two in the state.

GLEN:  So what happens if a student needs them, and they’re not available?

NICKY:  That is a good question.  I think often, you know, school districts try to provide a paraprofessional that does not have the training or to lean on if they have a teacher of the deaf or a teacher of the visually impaired.  Those people play a role, as well.  But some districts don’t have teachers with training in working with deaf or blind students, let alone deafblind students.  So I think honestly, you know, there are students out there that are getting some amount of support throughout their day from their teachers and paraprofessionals, but not from anyone who understands what their educational needs are or what accommodations might benefit them.

And so that’s part of what we’re trying to change, you know, little by little is to provide training, and also to help those districts train the people that they already have on staff to be better equipped to work with deafblind children.  But we’re a small staff, and Louisiana is a big state, and different districts have different levels of interest in working with us.  And so there’s a lot of factors that kind of limit our reach in terms of providing that information and support.  But, yeah, it is definitely a complex problem.

GLEN:  And how much does it improve for an individual student if parents are loudly advocating?

CATHY:  We don’t know yet.  We haven’t gotten that far.  But that’s our goal.  It could make the world of difference.  Parents have access to the legislature.  They have access to the school board.  They have access to every level of decision-making in our state.

GLEN:  So when you’re saying we haven’t gotten there, are you saying that parents aren’t advocating in large enough numbers, or their advocation hasn’t proven useful in all cases yet?

CATHY:  They have not yet begun to advocate.  They’re really busy with their children, trying to help them become educated.  They’re advocating within their own school systems, if they’re even aware that their child is deafblind.

NICKY:  I think an important part of what we’re trying to do is, just as Cathy says, bring together more of a community of parents who have children who are deafblind.  Because I do think that parents are incredibly powerful, especially when they work together.  And I think that having an engaged, actively involved parent, you know, who’s asking good questions and pushing for resources and supports, makes all the world of difference in a child’s life.  And we want to help families.  We want to help give families the tools to be able to do that and to be able to help each other do that.

GLEN:  Well, I thank you both for joining me on the podcast.  I was just innately curious about this topic because it’s not one that I have dealt with firsthand.  And so some very useful information and interesting stories.  Thank you both.

NICKY:  Thank you, Glen.  It’s really been a pleasure.

CATHY:  Thank you, Glen, for the opportunity.

Signing Off on FSCast 244

GLEN:  If you’re interested in some deafblind-related resources, and those associated with educating deafblind kids in particular, Nicky and Cathy have made some available, and I’ve put them up as part of the blog post for this episode.  Go to blog.freedomscientific.com/fscast.  And if you’d like to be in touch, it’s always great to hear from you.  Write to fscast@vispero.com, fscast@vispero.com.  I’m Glen Gordon.  Thanks for listening, and we’ll see you in May.


Transcript by elaine@edigitaltranscription.com





edigitaltranscription.com  •  04/22/2024  •  edigitaltranscription.com