Blind Abilities team member Jeff Thompson gets a chance to sit down with Karen Santiago for an opportunity to learn more about the person behind The Blind perspective News Letter. Karen was attending the National Federation for the Blind convention 2017 in Orlando, Florida, her first convention and her first time meeting up with a lot of virtual friends.
Karen talks about her adjustment to Blindness and the tools and determination that she incorporated on her journey to reestablish her place in the World, and how to accept her new Blind World.
Through classes at Hadley Institute for the Blind ranging from Braille, Guide Dogs, Elevated Gardening, to Technology, Screen Readers and mobility, karen took them all. She was Student of the Year in 2010 at Hadley Institute and learned enough to land her job at Easter Seals.
Karen is a mom and she experienced it all from family, work, education, internships, guide dogs, distance learning and initiating and creating The Blind Perspective News letter.
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See complete transcription below.
Life Interrupted and The Blind Perspective – Meet Karen Santiago
The blind perspective is an online monthly newsletter it comes out once a month via email.
What I tell everybody the whole newsletter might not be for you but there’s something in there for everybody.
That was Karen Santiago, editor and creator of the Blind Perspective.
She is also a Mom, former business owner, teacher, and someone who just happens to be blind.
I’m older and I learned Braille as an older person.
People ask me “Why should I learn Braille?”
And I say because you become more independent as a Braille reader.
Although Karen met the challenges of vision loss head-on, Karen was not the only one dealing with the challenges of vision loss.
I have two two daughters and it was hard, very hard.
Karen’s story is about life interrupted, the challenges she faced, overcoming obstacles, and accepting blindness.
Well I gave up driving in probably 2001 because it was just just too hard, I just really couldn’t see, but I still could function as what I was doing as a director and the teacher, but then in 2007 I had a couple surgeries and they, they really went kind of bad.
Join us as Karen talks about her journey, her successes, here on Blind Abilities.
I signed up with Hadley, took a whole bunch of classes.
To find more podcasts with blindness perspective, check us out on the web at www.blindabilities.com, follow us on Twitter at Blind Abilities, and download our free Blind Abilities app from the app store.
That’s two words, Blind Abilities.
And for me personally, I just remember I’m like, why am I just saying you doing nothing, I can’t I just can’t be like this.
Welcome to Blind Abilities, I’m Jeff Thompson.
I was very fortunate to sit down with Karen Santiago, she’s from Boston, I met up with her in Orlando and I was so pleased that she agreed to come on to Blind Abilities and share a little bit about herself.
Yes she is the editor of the Blind Perspective, an online newsletter that thousands of people receive every month, and it is comprised of many other people contributing articles, newsletters, recipes, and other useful information from the blindness community.
I was inspired to hear Karen’s story and was so proud to be able to share it with you all.
So here she is Karen Santiago.
Can you cut meat?
Can you do change, you know stuff that I, I’m like, I can do this, sew on a button.
I can do that you know, and she said I was strong-willed.
I was strong-willed because I knew what I was doing and and I’ve lived in a sighted world more than a blind world.
So Karen let’s go back to when you entered the blind world?
Well I gave up driving in probably 2001 because it was just just too hard.
I just really couldn’t see but I still could function as, what I was doing at the director and the teacher, but then in 2007 I had a couple surgeries and they they really went kind of bad.
And I wanted to close in the beginning of January and they’re like no, I think you could do it a little longer, and then finally December you know I told all the parents, I think in October that I was closing in December because it just I really was a teacher that was my passion, that was what I’d love to do and it wasn’t, I wasn’t even doing the kids justice, the kids, I couldn’t see the kids and it wasn’t that, I wasn’t ever alone, but it was just too much of a struggle for me to see what I was doing so.
Karen how did your vision loss affect your family?
I have two, two daughters and they’re 19 and 22 just of, this week, and it was hard, very hard for my oldest daughter.
But she was always the first one to get me if I was in a jam.
My youngest daughter, when I was thinking of going to the Carroll Center, I came to her, now I’ve really never been away from my kids, and I came to her and I said, I’m gonna go to the Carroll Center and I explained to her what it was about and that I’d be gone for two weeks and she bawled, she just cried her heart out, it was horrible.
But the next day she said “Mommy I think you should go, I think you should go and learn and do things.”
Ad so I did and she actually wrote a poem in school about, they had to write about somebody they admire and she wrote all these things that I could do and she’s, they’re both wonderful girls.
It was tough, it was very tough for my oldest daughter.
She would blame my blindness for a certain thing she couldn’t do and it just took it a lot of adjustment for her.
I can imagine.
I mean that comes first, family, that’s where it’s affected first.
Let’s talk about rehabilitation and your desire to gain the skills that you’ve felt that you needed to face the challenges of blindness.
After that is when I went through the, why me stage, and all that.
I signed up with Hadley, took a whole bunch of classes.
I love the Hadley school.
When I left the Carroll Center I said I needed two things, mobility and Braille, and that is where I learned Braille.
And that is where I learned Braille.
Now I’m older and I learned Braille as an older person.
People ask me “Why should I learn Braille?”
And I say because you become more independent as a Braille reader.
You don’t have to learn the new code, all you have to learn is the alphabet just to get you by, that can help you so much especially if you don’t have a sighted person helping you.
And like I said, I’ve taken several courses, I’ve taken all the Braille courses to learn Braille.
And I took guide dogs, that’s how I learned about, I didn’t have my dog when I was taking courses with Hadley and there was a course about guide dogs and then that got me interested in, and of course I got my dog.
And there’s fun ones, like container gardening, there’s all internet type ones on how to use the Internet.
I’ve took a lot of courses between 2008 and 2009.
I was a Hadley Student of the Year in 2010, probably because they took so many courses.
And Hadley is great in the way that they work, it’s a remote type of learning, you can go at your own pace, the instructors are wonderful, and they’re willing to help and that’s the thing that got me started.
I got up, okay take classes, do something, learn what your other, the, I can’t remember the employment course and that was taught by Chuck Young who was a president at the time.
But that one just tells you and teaches you how to regroup and, and readjust what your strengths and weaknesses are, and what, what you’re interested in, and that’s how I got to think about what I could do other than teaching.
Oh yes, skills and confidence, so where did that lead you to Karen?
Then I started looking for a job, got an internship at Easter Seals for six months, and in the sixth month I was going to get my first guide dog, right when it was coming to the end of my six months.
My, the president of development, because that’s where I work, in the development office.
She asked me to stay on, and I was gonna ask to stay on if they didn’t come to me.
So I’ve been there six and a half years and I was hired for six-month internship.
And how did you come across that opportunity?
I was referred to them through my vocational counselor.
I had to first learn talking typer in order to have the typing skills to learn Jaws.
Karen what was it that made you decide to get a guide dog, and what made you choose the guide dog school that you did choose?
Well first I tried a local place in Connecticut that teaches you on-site, you don’t go there, but that didn’t work out.
They came and they said “no” and I was very upset, and I asked why, and they didn’t give me a reason.
So I took a break and then I contacted the Seeing-Eye, they came and they said yes, and I wanted a guide dog because, like I said before, I’m not a good cane user and I live in Massachusetts, and I live on the street that has no sidewalks, so when you’re walking with a cane, it gets mixed up with all the leaves and all the snow and I’m a very fast walker.
So it just slowed me down, so that was another reason I wanted a dog.
So I went to the Seeing Eye and I got my dog Sheila who just turned 8 on Tuesday and she’s a great dog.
And how long of a course did that take you before you actually came home with the dog?
At that training is about four weeks, very intense training.
I didn’t think Sheila was ever going to warm up to me, she was very stubborn but she did and she works well.
I didn’t bring her you know, people may ask “Why didn’t you bring her to the convention?”
Because there’s other dogs here and she’s a very friendly dog and I don’t know if I would ever got to the exhibit booth with her seeing other dogs.
She just, I don’t think so, but I have to say I don’t think there’s as many dogs as I thought there would be here.
Karen I met you through an eye access group actually through Pete Lane and the members of that group.
Can you tell us a little bit of the Blind Perspective?
The Blind Perspective is an online monthly newsletter, it comes out once a month via email.
What I tell everybody, the whole newsletter might not be for you, but there’s something in there for everybody and the authors are all blind, and it’s all pine related topics, and the end of 2014, I was just thinking about doing something, I love Braille and I was trying to think of something to do with Braille and I really couldn’t come up with anything, and then I thought maybe I could reach an audience and just create this newsletter.
I was doing interviews for a chat site, just interviewing people on that chat site to get to know them and they had other things in that newsletter as well, but it became too much of a copy and paste, and I said we could do something better than this.
So I got together with a group of people and I asked people, I asked somebody who I know who loves to read and she does “Have I got a story for you.”
I asked another person through Hadley, two people that do our computer program, one is PC and one is all about Apple devices in the iPhone, and they both came on board.
I have a person who does Braille on the side and he came aboard, he’s the second hand man, he’s the one that does all the website and get that up and running for us, and then of course Sheryl I have for the gadgets.
So I just found people that I knew who had a knowledge of something and incorporated into the Blind Perspective.
We wanted an accessible arts/crafts person and we put a notice out there on our Facebook page and Lindy from South Africa creates those accessible craft projects.
Very descriptive and easy for a blind person to do.
And then I have Danny who is recent.
He does the exercise article and he’s very descriptive as well.
Nice short brief, it will give you what it’s good for, the exercise, and then a health tip at the end.
I do the “Movers and Shakers” which is about an individual or a company that up and coming, or has a product or a service for blind people.
Another article I do is the”International Perspective” which is one that I really like.
I talk to people from around the world and ask them what life is like as a blind person in their country.
It sounds like you’re really passionate about that topic?
I really like that one because it’s really all about blindness in another country.
We’ve done Israel, India, China, Hungary, Algeria, Iraq, and that’s just off the top of my head.
Yeah that really brings an international perspective to the Blind Perspective.
It must be very interesting.
So you learn a lot and you realize being here in the States and, we’re quite lucky compared to a lot of other countries.
Yeah I’ve read some of them articles and they’re very well done Karen.
And of course there is recipes and riddles and I hope I’m not leaving anybody out.
I just had a financial article and he went from creating a budget and explaining cash flow and credit and IRAs and things like that in a very simplistic way, great guy, and I think another thing to mention about the perspective, it only comes out once a month, so you’re not it’s not a chat site, it’s just one email a month.
And we have it in audio format and we’re trying to get it on Newsline.
All you have to do is send a blank email to email@example.com.
Karen if anybody’s out there that feels that they could contribute to the Blind Perspective, is that a possibility?
They could, absolutely.
We’re always looking for a different avenue, or different perspective from somebody.
We’d like to do something about clothing or help them, more like beauty type fashion, something with fashion and how to help blind people, you know do more things independently, home like, so that would be something good.
We always take suggestions from the readers.
So if anybody has a suggestion or a topic that they want to bring forth, we’re definitely open to anything.
And then I’ve talked to some guys here, and it’s basic, I said how do you know you a close match?
And they say “Well I just grabbed a polo shirt and a pair of shorts” and it’s usually the polo shirt slash golf shirt is a solid color, and then the pants are neutral so, and guys typically wear white, blue, tan, black, and those are all neutral colors.
And of course like, I’m in bright yellow pants with the peach shirt.
So girls obviously dress brighter, but guys could be a little more fashion.
I just may have to submit my articles on men’s fashion.
So Karan, what else do you like to do, what are your hobbies?
I like to walk, I like to shop, I like to hang out with my kids, I love to be outside on the deck, walk with my dog, I host games on chat sites.
Well that sounds great.
Karen you’ve come a long ways and what advice would you have for someone who is just facing vision loss?
Oh they can do whatever they want to do, don’t let the blindness stop you.
You know, don’t let the blindness control you, you control the blindness and just go out and do whatever you want to do.
My daughter’s took me to this place beginning of June called Ramblewild, it was a rope course.
We were there for 4 hours and had the time of our life.
I couldn’t see anything I was doing.
I was up on platforms climbing on like tight ropes and rope bridges and going down zip lines.
I got banged up, bruised, battered, but it was the time of my life.
You can do anything, it doesn’t, when that the instructors said “Oh I’m sorry I didn’t know you were visually impaired” as he was helping me up the letter, I said “Oh no I can’t see anything!”
And so I think they got more nervous than me, and my girls were a little nervous too, but it was so much fun.
I want to go back cuz I did the yellow and blue courses.
I want to go back into the green courses.
My daughter just graduated from college with a crazy outdoor wilderness program and she got a certificate in course instruction.
So this was one of the places where she did her training and I said, I want to go there, and she knew the park manager and told him about my blindness and he said “Yes she can come, sure.”
So we did it and I met him at the end and they were great.
The staff was great, the rope course was great, it’s all these different elements that you to go from point A to point B.
And you’re using carabiners, so you have to hook yourself up to each course and thenat some of them they have carabiner stops.
So I could be walking on a tightrope and my ropes connected to me will stop, so I have to stop well on the tightrope and unhook it from the left move it over the knot, click it back on, get the other one unhook it, you’re doing this while you’re standing on a tightrope but it was a ball.
It was a blast, it really was a blast, I only fell three times and when you fall you’re you know suspended so you got to get yourself back up on that course.
It was a little tough but I did it.
They had one daughter first and she would say “Okay this is what’s coming up.”
And then Candice who is the one who got the degree would say “Okay now you have to step down.”
Because the first step is always hardest cuz you’re going down and you don’t know how far apart these things are.
I would step down and I’m like “Where is it where is it?”
Because I didn’t want to fall the first step.
They were great.
It was just you know like, companies have team-building events, this was like a family bonding event.
It was great.
Ropes yeah, what a wonderful experience.
Karen is there any message that you would like to leave our listeners?
I think we all go through it and that’s natural, but I think what you should do as a person is think about what you want, and for me personally, I just remember I’m like “Why am I just saying you’re doing nothing, I can’t I just can’t be like this.”
And you have to be your best own advocate.
You got to get out there, you got to do something, find something that you’re passionate about.
I used to be a preschool teacher, I couldn’t really do that blind, I didn’t want to do it as a blind person because I just wouldn’t give it my all.
So I took classes and you have to regroup as far as what your strengths and weaknesses are, find another area.
I would never have thought in a million years that I’d be working for Easter Seals in a development capacity.
I just never thought that.
The Hadley school was instrumental when I learned all about Excel which I love, and that really helped me to get my job.
Karen thank you very much for taking the time out of your day, spending time with us here on Blind Abilities, sharing your experiences, your stories, your journey, you did a great job, and thank you!
Awesome, thank you!
Be sure to check out the Blind Perspective, that’s the Blind Perspective.com.
Check it out, subscribe to it, it’s only once a month, a lot of stuff and as Karen says.
There’s something in there for everybody.
And a big big thank you to Chee Chau for his beautiful music.
That’s lcheechau on Twitter.
Thank You Chee Chau.
Thanks for listening, until next time bye-bye.
When we share what we see through each other’s eyes, We can then begin to bridge the Gap between the limited expectations and the realities of Blind Abilities.
For more podcast with the blindness perspective, check us out on the web at www.blindabilities.com, on twitter at BlindAbilities, download our app from the app store, Blind Abilities, that’s two words, or send us an email at firstname.lastname@example.org, thanks for listening.