Full Transcript
John Paré:
… and if you don’t even have a job in the first place, it’s very hard to afford. So, this bill would create a refundable tax credit in the amount of $2,000.
Announcer:
Please welcome John Paré.
John Paré:
I think it’s very important to really internalize the high expectations for yourself. It’s harder than you might think.
Announcer:
Director of Advocacy and Policy for the National Federation of the Blind.
John Paré:
That was so rewarding to know that I could do something that I thought would be challenging for any person blind or sighted, that I could successfully do that as a blind person, and that I had the skills and confidence to do that. It’s something that helps you have confidence to do other things that you might think are going to be challenging as a blind person.
Announcer:
Interview conducted by Blind Abilities Correspondent Simon Bonenfant.
Simon Bonenfant:
This is my eighth year that I have done Washington seminars. So, in that time, I’ve seen a lot as well of great changes and it’s really advocacy at work of the American people.
Announcer:
Educating and advocating as a representative of the blindness community in Washington, DC.
Simon Bonenfant:
Something that I stressed congress this year was that these issues are issues for the blind to live full and independent lives.
John Paré:
It is the opportunity to do, not to talk to members of congress, but it is the greatest opportunity you’ll ever have to network with thousands of blind people from all over the country and really all over the world.
Announcer:
Now, please welcome John Paré and Simon Bonenfant. We hope you enjoy.
Simon Bonenfant:
Hello, everyone, on Blind Abilities. This is Simon Bonenfant here, and I got the chance to talk to John Paré, who works for the National Federation of the Blind as Director of Advocacy and Policy. John, how are you doing today?
John Paré:
Fantastic. Glad to be here.
Simon Bonenfant:
Thank you for talking with me. We just wrapped up the 2020 Washington Seminar in Washington, DC, and it was a very successful seminar to my knowledge. I had a very nice time and got to network and got to talk to a lot of congressmen in the state of Pennsylvania where I’m from. So, can you talk a little bit about this year’s Washington seminar that we just had passed, and how it went for you, and can you just explain a little bit about the basic idea of Washington seminar as well?
John Paré:
Absolutely. So, we try to get people from every state and every district in the United States to come pretty close to doing that. There’s 435 members in the house. We get almost everyone represented and every state represented. Our goal is to come talk about issues that would improve the lives of blind Americans.
John Paré:
I can go through the issues if you like here in a moment. Maybe talk a little bit about what we do. So, we get a headquarters hotel. This year, it was the Holiday Inn right near the Capitol and we assembled there. Usually, coming in on a Sunday. We have meetings all day Monday. We had the big kickoff meeting on Monday night. This year, we had the Chairman Bobby Scott, the chair of the House Education and Labor Committee, who was our featured speaker. He did a really nice job and talked about the transformation to Competitive Employment Act.
John Paré:
Then we had the bulk of our meetings on Tuesday, which you’ll hear about. Then we had a reception with over 10 members of congress over in the Senate Russell Office Building Tuesday night, more meetings on Wednesday, and then just a few meetings on Thursday for the larger states.
John Paré:
It was a lot of fun, a lot of people there. I think we really helped communicate our message to congress. It’s nothing better than having actual constituents come and talk to their actual members of congress. Members of congress are very interested in hearing from their constituents. That’s, I think, what is so exciting.
Simon Bonenfant:
Oh, absolutely. I’ve seen great changes come to pass. This is my eighth year that I have done Washington seminars. So, in that time, I’ve seen a lot as well of great changes and it’s really advocacy at work of the American people.
John Paré:
Yeah. That’s fantastic. I didn’t know you had quite up to eight. Well, you’re quite the veteran.
Simon Bonenfant:
Yes. So, John, can you talk a little bit about the specific issues that we discussed this past seminar?
John Paré:
Sure. So, the first one is the Access Technology Affordability Act. The problem here that this bill is trying to solve is the fact that access technology, this would be things like refreshable braille displays, braille notetakers, braille embossers, screen reading software, maybe some of the high-end magnification equipment is all very expensive.
John Paré:
This equipment is needed for education, employment, and independent living, and especially we focused in on employment, the fact that to look for a job nowadays, to search the job aggregators on the internet, and find the job that might be something you’d like to apply for, and then they go through the application process really requires having this equipment at home and using your computer possibly with a refreshable braille display or a screen reading software or maybe screen magnification software, and if you don’t even have a job in the first place, it’s very hard to afford.
John Paré:
So, this bill would create a refundable tax credit in the amount of $2,000 that could be spent all in the first year or spread over three years, specifically for blind people as defined in the IRS code right now. This is defined in the IRS code for this kind of access technology equipment that I just described, so that you could get that. Even if you don’t have a job and therefore weren’t paying taxes, the fact that it’s refundable means you’d still get a refund.
John Paré:
So, if you spend $1,000, you could still get a check back in the amount of $1,000. They’ll reimburse you for that purchase. We think this would really help improve education and employment opportunities for blind Americans, and it seems like congress is agreeing with us because we picked up probably a record number of co-sponsors in just one week. We picked up 14 co-sponsors in the house and two in the Senate on this particular bill.
John Paré:
So, we’re up to 63 co-sponsors in the house and 17 co-sponsors in the Senate. So, we’re very excited about that. In fact, the sponsor of the bill and the house Congressman Mike Thompson from California spoke at our congressional reception Tuesday night. He is the chair of the tax policy subcommittee within ways and means. That’s the committee of jurisdiction, and then in the Senate, we have Senator Boozman, a senior senator from Arkansas, who was the bill sponsor and Senator Cardin happens to be my Senator right here at Maryland, who was the lead co-sponsor. So, that’s really the issue and where we stand on trying to move this bill forward.
Simon Bonenfant:
Great. Can you describe the other issues that we were discussing?
John Paré:
Sure. I’ll go right into the second issue, which is the greater access and independence through non-visual access technology, and that’s the Cane Act. This bill is working to solve the problem of three categories of equipment. The first category would be medical equipment, home-based medical equipment. The fact that so much of that equipment is not non-visually accessible, it’s built using new flat screen, tight screens, and menus and other things that are not tactilely accessible, which is ironic because diabetic retinopathy is the leading cause of blindness.
John Paré:
So, the idea that you might need to use to monitor your diabetes at home as a blind person is very likely, and to not have the very equipment you need to be accessible is just wrong. So, we want to try to have standards developed. The bill authorizes the access board, which has a lot of expertise in developing these types of standards to create standards and then propagate them.
John Paré:
Companies would have a number of years to then have their equipment conform to those standards. It wouldn’t be very expensive. It doesn’t require any kind of retrofitting. It would only be future equipment. The idea if you mass produce equipment that’s already very technologically based at things like voice or other techniques to make it accessible really is a very minor additional cost, but with a major benefit to consumers.
John Paré:
The second category, so that’s the first category. The second category would be your exercise equipment, maybe to help make sure you don’t get sick in the first place. So, to have accessible exercise equipment, especially in the home, and then the third would be your home appliances. That would be things like your microwave, a washer, a dryer, your stove. As you know, these things continually have less tactile.
John Paré:
The old-fashioned tactile knobs that used to be relatively accessible have been replaced by these flat screen interactive displays where you have to answer a question and then based on that answer, another question, and another question, and those aren’t accessible, but it wouldn’t be hard, and the interface that you have on a voting machine or an ATM machine or your iPhone where there is an earplug or just a little teeny speaker where if the questions being asked are made accessible, and then some slight tactile interface that knows what buttons to push.
John Paré:
So, really, that can dramatically improve independent living, exercise, overall health, and we hope that that bill will get passed. It’s introduced currently in the house by Congresswoman Jan Schakowsky of Chicago. She’s the chair of the relevant subcommittee. This bill is assigned to the energy and commerce committee, house energy and commerce committee. Congressman Frank Pallone is the chair of that committee, and she’s a subcommittee chair.
John Paré:
Currently, there’s 13 co-sponsors on that, and that also benefited from a substantial increase as a result of Washington seminar and the work that people did to talk about that legislation. I can keep rolling right into aim high if you’d like.
Simon Bonenfant:
Yeah. Sure.
John Paré:
All right. So, the last, the third issue has to do in higher education. So, accessible instructional material on higher education is the name or nickname is AIM high, and that bill is intended to solve the problem of inaccessible educational platforms, textbooks, and other lab software that you have, all the different digital software that is being incorporated in the overall higher education process, and trying to make sure that that’s accessible.
John Paré:
Currently, the law requires that. So, that’s not the problem. The problem really is that schools and developers aren’t quite sure what they need to do to make those things accessible. That’s what this bill aims to solve, to try to explain what needs to be done to make those things in an educational setting accessible.
John Paré:
So, the bill authorizes the creation of a commission, a 19-person commission that would be appointed by congress, partly by congress and partly by the Department of Education, and it would comprise of people with disabilities, and then members from schools, members of publishers, and also technology companies. The bill outlines a fairly specific distribution of types of expertise to make up the 19-person board and exactly whether certain members are appointed by the house and the Senate and some by the secretary of education.
John Paré:
You could have this whole commission that would really be the right complement of people to try to come up with these. It really will be informative guidelines of what needs to be done and then that would be propagated out to schools so that they could a better job with their education, their procurement of technology. Developers could do a better job even making the technology accessible in the first place and really improve the whole educational system.
John Paré:
The bill is supported by 14 different disability groups, who’s who of disability groups and by the American Council on Education, which represents virtually every school in America. So, the schools are for it. The students by virtue of disabled students are for it, and the publishers, the American Association of Publishers is for it. So, in effect, the textbook companies and so forth, and even the software industry and information association is for it. They’re the ones who do some of these other platforms.
John Paré:
So, virtually, every stakeholder is for this. So, I’m hoping, and we’re hoping that this bill will move through congress very rapidly when there’s firstly no cost and virtually complete support for it. It is sponsored in the house by Congressman Roe from Tennessee and cosponsored by Congressman Courtney of Connecticut. It’s up to 12 co-sponsors, but it hasn’t been introduced for very long in the Senate. It’s sponsored by Senator Warren and then co-sponsored by Senators Sullivan and Ernst, who happen to be Republicans and also by Senator Bennett and Smith. The other name jumping in my head for a second, but they’re both Democrats.
John Paré:
So, it’s very bipartisan in both the house and the Senate. As a result, we put the other senator as senator test or the other Democrats. So there’s two Republicans, two Democrats. So, it’s perfectly bipartisan. So, we hope that that will move through the house and the Senate and get to the president’s desk, hopefully, within the next couple of months.
John Paré:
So, those are the three issues that really could be described as categories of one education, one substantially employment-related, and one independent living-related. Those tends to be the areas that blind Americans need, would benefit most from help from Congress in terms of laws that would improve our educational opportunities or employment opportunities, and help us live independent lives no matter what age we are, but maybe especially for older Americans.
Simon Bonenfant:
That’s great. Something that I stressed in my appointments with the congress this year was that these issues are issues for the blind to live full and independent lives and daily lives. This is really what the NFB philosophy is about is living successfully and equally and participating in the same way as all the other citizens. So, can you go into a little bit more for those who may not know a detail of the NFB’s general philosophy and things of that nature?
John Paré:
Sure. Sure. Well, one way we like to sum it up is we say that the National Federation of the Blind knows that blindness is not a characteristic that defines you or your future. Every day, we raise the expectations of blind people because low expectations create obstacles between blind people and our dreams.
John Paré:
We believe that you can live the life you want and that blindness is not what holds you back, and that if you have the tools, technology, and training, and that people are open to integration and being competitive employment that we can live the lives we want. So, we work very hard to make sure that people get rigorous training. We operate three model training centers where you can go. You live there and you get very thorough training from 8:00 AM to 6:00 PM.
John Paré:
You go through intensive classes and these would include things like braille orientation and mobility, so you learn to effectively use a white cane and get around complicated settings in terms of whether it’s a suburban, rural, city, bus, different transportation, different types of street crossings, so that you can really do what we would describe as structured discovery in terms of traveling around, traveling being the word here we’re using for really walking around with a white cane and then you would learn to use, effectively use screen reading software so that you can use your computer.
John Paré:
There’s no reason that the person on the other end of an email wouldn’t even know that you’re blind. You’re going to be able to bounce back and forth. Email is just as effectively as anyone else. Of course, we don’t believe that being blind is anything to be ashamed of.
John Paré:
In fact, we believe that using the word blind is perfectly fine. It’s not something that you’d want to shy away from. I’m a blind person. That’s not negative. It’s just a fact, and whether or not you’re totally blind or might have some residual vision really is not the question. I do have a little residual vision, but it’s not enough for me to operate as a sighted person.
John Paré:
I have to use screen reading software because I really can’t see the screen. I have to use a white cane. Otherwise, I’d fall off the curb or worse. I use NFP news line to listen to the newspaper and I use voiceover on my iPhone. So, that’s just some of the things that help me live in the same way with the same level of effectiveness that other people do.
John Paré:
A lot of that is you got to make sure that you have the training and that you have your own personal high expectations for yourself, and that hopefully society has high expectations for us as blind people so that we can be integrated and live in an integrated and equal way as everyone else. That’s what makes our own individual lives so rewarding, but also contributes to the rest of society and to our local community, our city, our state, and our country.
Simon Bonenfant:
That’s great. Now, can you describe your life and a brief summary of leading up to your role in the NFB, a brief summary of your journey to get where you are now?
John Paré:
Absolutely. So, I am 60 years old, and when I was about 35, so about 25 years ago, so I was sighted, and about 25 years ago, I suddenly started losing my sight to something called cone-rod retina degeneration. It’s one of the many retina degeneration diseases that one can get. It just happened that I got it. It’s not hereditary. It just happened.
John Paré:
So, my eyesight started to deteriorate. It’s not curable. It’s not treatable, and it just results in a slow but steady deterioration. It was sad, especially at first as I began to do less and had a good job, but I started being less and less successful in that job because I wasn’t able to do things. I didn’t know any blind people. I didn’t know how people who are losing their eyesight did things. I had never heard of the National Federation of the Blind.
John Paré:
In fact, I, in 2001, eventually got to the point where I lost my job and was unemployed. I didn’t think I’d ever work again, and I didn’t think I’d be able to. I didn’t know how I would work again. I didn’t have any skills to operate as a blind person.
John Paré:
I lived at the time in Virginia and I moved to Tampa, Florida close to where my parents live because I thought, “It would be nice to live close to them. I could sit at home and do nothing from anywhere.” So, I decided to do that from Tampa, Florida. I was sitting home and probably feeling sorry for myself and not really doing anything.
John Paré:
I liked to listen to the newspaper. I discovered NFB news line and I listened to the newspaper all the time. NFB news line is a service offered by NFB, the National Federation of the Blind, that allows you to listen using a synthetic voice to today’s paper today. So, you could listen to the Today’s, New York times or USA Today or Wall Street Journal and so forth.
John Paré:
So, I did use it and I really liked it. Eventually, after maybe six months, I thought, “This is such a great service. I wonder what the NFB is about.”
John Paré:
So, I did some research and found out that the National Federation of the Blind is the largest organization of blind people in United States, and they had chapters and they meet once a month and there were 700 local chapters. I did some more research and I thought, “Oh, my gosh. There’s a chapter that meets about a mile from where I lived there in Tampa.” I said, “Oh, my gosh. They’ve got a meeting this coming Saturday.”
John Paré:
So, I went to the meeting and I met all these blind people. It was the first time I met some other blind people as a blind person myself, but they weren’t sitting at home doing nothing. They had jobs and families and were active.
John Paré:
I thought, “Wow! I want to be more like you guys.”
John Paré:
So, I threw myself into the National Federation of the Blind, and particular in NFB news line because I liked it so much and I learned to help operate it for the state of Florida. As a result of that, I started meeting a lot of National Federation of the Blind leaders, and eventually started meeting the leaders in Baltimore.
John Paré:
I went to my first Washington seminar and met more leaders, and really got hooked on the whole thing. I realized I had made a huge mistake that I could be a successful employable happy blind person. Pretty soon, I actually, I think as a result of my sales skills and other skills that I had from my previous job, was actually offered a job at the National Federation of the Blind, which I, of course, jumped at.
John Paré:
So, in 2004, I started working at the National Federation of the Blind and lo and behold or ironically, and to my greatest happiness, my job was to help run NFB news line for the whole country, which had brought me into the NFB, and certainly that was where my heart laid in that, and I love news line, and I loved working at the NFB.
John Paré:
I was so happy to be doing all that. I got more training and certainly now I’m surrounded by National Federation of the Blind leadership and after a while, I got moved to another job having to do with public relations. Then I was moved to my current job, which is the executive director of advocacy and policy where I primarily focus on this type of legislative advocacy.
John Paré:
So, my career here at the NFB, and it’s really not so much that I have to have worked at the NFB. I think the idea is the NFB helped me realize and I hope other blind people realize that with the training and the attitude, as you hear from my story, a lot of that was my personal misunderstanding that I couldn’t do better than I was doing. When I learned that and then got better skills training, the combination of those two really helped me reached my full potential, which I am so appreciative to everyone, and then meeting other NFP members just like yourself.
John Paré:
Every time I meet other people like you doing this podcast and doing all the things you do and having gone to eight Washington seminars, your success rubs off on me and I’m constantly renewed and maybe this podcast helps renew the people listening to it.
Simon Bonenfant:
Absolutely. How was your family and friends and supporters? How are they throughout your whole journey?
John Paré:
I think people saw that I was as much happier and was meeting really my potential. So, people were very supportive and I created a new network of friends. So, my old friends were supportive. Of course, I stay in touch with them and my family, and then my new network of friends is something that I treasure.
Simon Bonenfant:
Absolutely. So, we usually ask this question. What advice would you give to a transition-age student going into high school, college or the workplace or someone who is newly blinded? What advice would you say is most important and valuable to you that you would like to pass on to other blind Americans?
John Paré:
All right. Sure. A couple of things. One of the things that’s really worked for me is making sure that I have friends that are successful, blind people, successful blind mentors. For me, that’s been all people within the National Federation of the Blind, and learning from them, and knowing how important it is to network, and to seek out, and appreciate blind mentors.
John Paré:
I think it’s very important to really internalize the high expectations for yourself. It’s harder than you might think, but if you work at it, you can absolutely, you can do it. Then to get to the skills training, that would be at one of the three National Federation of the Blind model training centers. There’s one in Louisiana. There’s one in Minnesota, and there’s one in Colorado, surrounded by this kind of training every day. I did, so I have not gone specifically to a training center for the full training period, but I did spend three weeks as a traditional student going to the Louisiana Center for the Blind, and it was extremely, well, it was fun. I learned a lot and I can’t say enough good things about it.
John Paré:
No matter how much almost you know, even if you already think, “Well, I already know braille pretty well and I already get around with a white cane pretty well,” when you finish this, you’ll be expert and even if you bring some of those skills to the table, I doubt you bring all the skills that you can learn at one of these centers and doing that, especially as you described when you’re younger transition age youth, it’s something that will benefit you your entire life.
John Paré:
So, I urge people to get this really thorough skills training. I mean, one of the things I did at the end of my three weeks is I really wanted to do one of the occasional weekend activities they do is they go rock climbing either frequently outdoor rock climbing, but I had missed that, but I asked if I can just go do indoor rock climbing, which I had never done. So, I approached the facility, wearing sleep shades, and my white cane, went in, got on the harness, climbed the wall, got all the way to the top, propelled back down. That was all totally as a blind person.
John Paré:
That was so rewarding to know that I could do something that I thought would be challenging for any person blind or sighted, that I could successfully do that as a blind person and that I had the skills and confidence to do that. It’s something that helps you have confidence to do other things that you might think are going to be challenging as a blind person.
John Paré:
So, I think that’s the kind of thing, but wherever you are on your journey, know that other people have been at your spot and that we urge you to keep moving forward. It’s really exciting.
Simon Bonenfant:
Well, I think it’s great. I think one of the great things about the NFB, as you can speak on as well and as you have spoken on, is the community of how we have so many people. The federation is in our movement to learn from, mentor, and just have as friends.
John Paré:
Absolutely. Absolutely. I hope that people listening come to your ninth Washington seminar.
Simon Bonenfant:
We have, next big gathering is our National Convention. You want to give listeners quick dates on that if you have them?
John Paré:
Yes. Okay. I don’t have the dates right in front of me, but if you go to the www.nfb.org/nationalconvention or just grab the link off the homepage to the national convention. This year, it’s going to be in Houston, Texas, mid-July. It’s anticipated to be probably the largest convention we’ve ever had. It is the opportunity to do, not to talk to members of Congress, but it is the greatest opportunity you’ll ever have to network with thousands of blind people from all over the country and really all over the world.
John Paré:
We usually have a number of international visitors who come and the number of special interest division meetings incurred, there’s usually 30 or 40 meetings of that, different educational things, the plenary sessions. There’s nothing more exciting than President Riccobono’s state of the union speech, his presidential report that he does always the first plenary day in the first session in the afternoon, where you get to hear what’s happened over the previous year. That’s always so exciting and inspirational to hear about the successes the National Federation of the Blind had. So, that’s, for me, his presidential report is one of the most exciting talks that occur at the convention.
John Paré:
Tied with that would be his banquet speech where he gives more of a philosophical talk about where we are in blindness and where we are, where we’re going, and really analyzes the subject in a really insightful and incisive way. It’s really exciting. It’s part of the banquet that we have, which is typically the last night of the convention, and that is something that you would not want to miss, and it will be in Houston at a really nice hotel where we have an incredibly discounted rates.
John Paré:
So, it’s really worth taking the time and effort to go there. I think once you’ve been at a convention, you’ll realize just how much you can learn and you won’t want to miss another one.
Simon Bonenfant:
Well, thank you, John, for talking with us on Blind Abilities. You’re a very inspiring person and really admire the work you do in the federation and keep up to the great work and here’s to another year of legislative advocacy on behalf of the blind. So, thank you for-
John Paré:
Thank you.
Simon Bonenfant:
… talking with the listeners and have a very nice day.
John Paré:
Thank you so much for having me.
Simon Bonenfant:
Cool. Very good.
John Paré:
All right. That was fantastic. We are honored to be here.
Announcer:
Big thank you goes out to Simon Bonenfant for doing what he does, going out there asking the big questions, getting the answers, sharing the news and being there on the spot. So, thank you Simon, and thank you John Paré for what you’re doing at the National Federation of the Blind and for all blind and visually impaired people around the globe.
Announcer:
A big shout out to Chee Chau for his beautiful music. You can follow CheeChau on Twitter @ LCheeChau.
Announcer:
For more podcasts with the blindness perspective, check us out on the web at www.blindabilities.com, on Twitter at Blind Abilities, and be sure to download the free Blind Abilities app on the app store. That’s two words, Blind Abilities. Check out the Facebook group Blind Abilities Community, where you can share, learn, advise, and enhance the opportunities for yourself and others.
Announcer:
You can also check out the assistive technology community for the blind and visually impaired, as well as the group Career Resources for the Blind and Visually Impaired and for the entertaining side of news and technology from a blindness perspective, be sure to check out the Facebook group That Blind Tech Show.
Announcer:
I want to thank you for listening. We hope you enjoyed, and until next time. Bye-bye.
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