Listen to Show 62

Lots of good stuff in this episode!

Learn more about J.C. Hutchin's new book, "Personal Effects: Dark Art" at http://jchutchins.net and listen to my previous interview with him at http://disability-411.com/?q=node/60.

Volunteer for the SEDL study if you work in the health care industry and either have a disability, work with someone who does, or supervise an employee with a disability. Email them at dbtac@sedl.org or call 1-800-476-6861.

Visit http://readingrights.com and sign the petition to allow text to speech for ebooks!

And check out the podcast by today's contributor, Day Al-Mohamed, at http://dayinwashington.com.

TRANSCRIPT FOLLOWS

Disability411, Show number 62
(music)
Beth Case: Hello, and welcome to the Disability411 podcast, your podcast for disability information. And I’m your host, Beth Case.
Today’s show will have a little bit of this, a little bit of that. We have some news, some announcements, and then we will have an interview submitted by Day Al-Mohamed of the “Day in Washington” podcast. It’s a really interesting interview with Lars Lindberg, who is from Sweden, and it talks about disability policy in Sweden. You know, I know I’m guilty of this, but we tend to get so focused on American disability law and what’s going in the United States as far as disabilities that we lose sight of well, what’s going on in other countries. So I was really excited to get this submission from Day, you know, looking at what’s going on in other countries. And, you know, if any of you all live outside the United States and you’re involved in disability rights or anything related to disability, drop me an email. I’d like to learn more about what’s going on in other countries and talk about that on the show.
Of course, any of you all can submit content for the show, as Day is doing again. She’s a wonderful contributor and I so appreciate it. But you can do it, too. So if you have an interview that you’d like to do or a segment you’d like to record yourself, just drop me a line, disability411@jinkle.com, and let’s talk.
So before we get to that, I do have some things to talk about. I’ll start with the personal stuff. I have officially been accepted into the doctoral program in Instructional Technology at Texas Tech University. I think may have talked about before how I was applying and how I was planning to go back to grad school, but until this past week, it hasn’t been official, but now it is, and I’m very excited and terrified at the same time. This show will continue to go on. As I’ve said before, you all are far too important to me to not continue this podcast, so don’t worry there. But I will especially welcome any of you who would like to submit content to the show to help keep it going. So again, just drop me an email if you’re interested.
Another bit of sort of fun news before we get into some of the fun stuff. Some of you may remember I interviews author J.C. Hutchins in a previous show. He is a novelist and the author of the podcast novel “7th Son” which I just loved. It’s kind of a thriller. I can’t explain it., just go listen to that episode. I think it’s in the 40s somewhere. Look in the past shows list and you can listen to that. Anyway, J.C. now has another book that’s coming out. This one is going to be in print and it will be out in June 2009 and it’s now just a book, it’s an experience. When you buy the hard copy of the book, you get an envelope that comes with the book that has stuff in it. It was artifacts, it has tangible items that are related to the story in the book, like there are websites you can go to, phone numbers you can call, I don’t know what all. Probably text messaging and email, just all kinds of ways that you can interact with the story outside of just reading the book to make it a larger experience. And you’ll learn a lot more about the world the story takes place in and what’s going on than you would just reading the book. So it sounds kind of fun, it sounds kind of exciting. The book is called “Personal Effects: Dark Art”. It is a horror. I have to admit I’m a little more into the thriller kind of genre than the horror genre, but I’ll probably give it a shot just because I like J.C. and I know he’s a good author and this just sounds exciting to be able to do this kind of interactive stuff. Go to jchutchins.net, the link will be in the show notes, and go check it out.
Alright, I just wanted to plug him as a former guest and as someone I really enjoy reading.
Next, I want to talk about some research that is being done by the Southwest Educational Development Laboratory, better known as SEDL. Some research that they’re doing that you all may be able to help with. They are wanting to talk to anyone who is working in a health care industry of any kind, if you either have a disability, or you work with someone who has a disability or you supervise someone who has a disability, in the health care field. And it can be everything from home health care to dentistry to, of course, to working in hospitals, doctors or nurses or lab tech, or really anything. If it’s related to the health industry, and you either work in the field and you have a disability yourself, or you work in the field and have a co-worker who has a disability or you supervise an employee who has a disability in that field, they want to talk to you. You do have to live in Texas. They are only right now looking for people who live in Texas that meet this criteria. You know, they may open it up, I’m not sure, later, but right now they’re just focusing within a certain region. So if you meet this criteria, send an email to dbtac, that stands for Disability and Business Technical Assistance Center, dbtac@sedl.org, or you can call 1-800-476-6861 and tell them that you heard about the research that they’re doing and that you are interested in participating.
Ok, the last thing I’m going to talk about, I’m only going to talk about a little bit because I’m hoping to get an interview set up in order to give you a lot more information from the horse’s mouth, as they say. But this has to do with Reading Rights, and you can learn a whole lot more about it at the website readingrights.com. And, this all came about – let me give you all a little back story.
You probably heard about the Kindle, the eBook reader from Amazon. Well, when the Kindle 2 came out, one of the improvements that it had was that it would read the text out loud. Now, this is your typical electronic reader. It has the sort of mechanical, computerized voice. Pretty good, but still not like having a human being read the book to you, but it was very exciting because of the potential of opening up access to people with print disabilities. So that, you wouldn’t have to request anything special, you wouldn’t have to go through a membership, like at RFB&D or Bookshare or something like that. Those are wonderful organizations, but the ability to independently and without jumping through extra hoops, be able to listen to a book you bought yourself from Amazon.com, was very, very exciting.
Well, it seems like days after its release, that was shut down because the Author’s Guild protested that they did not sell the audio book rights to their work, you know -- when you buy a print version of the book you do not buy the audio book version. I’m not saying this very well, but basically, they sell different versions of their book on different contracts. So they might sell the print rights to one place and sell the audio book version to someone else, or it’s something that might be negotiated in the contract for additional money or whatever. So, their protest was that the Kindle would allow you to have an audio version of a book that they had sold only the print rights to.
Well, this has resulted in quite a bit of uproar in the disability community, and rightly so, because it was such a wonderful, exciting idea to allow equal access to print materials without having to jump through extra hoops or go through extra steps or paying more, in order to have access. And they’re taking that back. And I really think it’s a misunderstanding on the part of the Author’s Guild. I mean, let’s face it, people. Listening to a book with a computerized voice, no matter how good, is not the same as listening to an audio book, with a professional actor or actress, actors, actresses, reading the book. It’s just not the same. I really, sincerely doubt that people without disabilities are going to be happy just listening to this computerized voice instead of going to buy the audio book, if they’re the kind of person who likes to listen to audio books. But people with print disabilities, they’re used to accessing print materials that way. The point is access.
So a lot of professional organizations have banded together to protest and to try and work with Author’s Guild and work with publishers to say, hey guys, this is really all about access and we really want to be able to access your books without jumping through a whole lot of extra hoops. Just a few of the organizations that are back this, The American Council of the Blind, The American Foundation of the Blind, ARC of the United States, AHEAD – The Association on Higher Education and Disability, The DAISY Consortium – at this point there are 30 organizations which have supported this movement, including Disability411.
There was a protest in New York this week. I’ve already talked about this more than I intended to, because I’m hoping to get someone from Reading Rights on an interview so they can really tell it from their point of view, they can talk about how the protest went, but I just wanted to get you aware of this and what’s going on. And if you go to the ReadingRights.com web site, you can find out a whole lot more about it, see some video from the protest. And there’s also a petition there, and I would encourage you all to go there and sign the petition, just so we can get more awareness of what’s going on. Most people are probably thinking this is not a big deal because they wouldn’t have used it anyway. And the authors are thinking they’re going to lose all this money, when really, they’re not. So, anyway, go check it out.
Alright, I guess that’s really all of the news and announcements I have for right now. I’m going to turn this over to Day’s interview with Lars Lindberg. He is the Deputy Director at the Ministry of Health and Social Affairs in Sweden and hear a little bit more about what’s going on in Sweden. Day?
(Day in Washington intro music)
Day al-Mohamed: Hello and welcome to your Day In Washington Disability Policy Podcast. I’m your host, Day Al-Mohamed working to make sure you stay informed.
This week’s episode is a special edition so is somewhat longer than my traditional 6 minute podcasts. The reason being that rather than me personally providing a discussion or analysis of policy and legislation, I have a guest host who will speak about their policy interest.
I have to apologize if the audio is difficult to understand. Unfortunately, I had to use an analog tape recorder and the quality of the recording was poor. This narrated version of the podcast is to offer an alternative version if you had trouble understanding the audio of the original podcast.
This week’s host is Lars Lindberg from Sweden. Lars is Deputy Director at the Ministry of Health and Social Affairs in Sweden and works with Disability Policy Coordination in the Government Office. At the moment he is on leave of absence to work on a textbook about Swedish disability policy which is how I came to have the pleasure of meeting him and having him host this episode of Day In Washington.
Lars has been involved in the Swedish disability movement for many years and led the work on the Swedish National Action Plan for Disability Policy which was endorsed by the Government and the Parliament in 2000. That year, he was appointed head of the Swedish Accessibility Centre, which is the national advisory body for accessibility issues and Universal Design for All. Basically, Lars is responsible for coordinating, supporting, advising and advancing all efforts to make Swedish society accessible.
Lars Lindberg, I work in Sweden about disability issues. I am here on a study visit, mostly about the election campaign, but also to look into how disability issues are treated now in the United States and a comparison between our way of anticipating policy and yours.
Sweden, I think that many Scandanavian in northern Europe we have quite a quite long tradition of a welfare system which means that you have a combination of a distribution of resources so usually it is quite easy to get support, like health care, personal assistance, education and that kind of thing.

The way we have done so far is in Sweden is that we have a welfare policy where everybody must be included. We have free education, free health care and also free supports to stay at home with personal assistance. You don’t need to move to a nursing home or like that. You can stay at home.
On the other hand, we have been slower to implement anti-discrimination legislation in Sweden like in the United States.
We have legislation that covers employment, so if someone feels they are discriminated, they can sue the employer, but we have a system with an Ombudsman. So either the trade union or the ombudsman who does this part of the legal process on behalf of the person who feels discriminated. Then there can be negotiation. Most of the cases there is a settlement between the Ombudsman and the employer. So there are not many cases that come to the court.
The legislation has not been so developed the legal cases compared to the United States.
Disability policy in Sweden…You can say the roots of disability policy, for instance in employment started after the Second World War because of the lack of workforce. Many of the things that were developed as methods for people with disabilities come from that time of the Second World War.
Then during 60s there was more of a debate about integration and normalization. You had institutions, like in many other countries. That was a debate about why should people with disabilities live in institutions. This is not the normal way of life. Then there was a discussion of shutting down the institutions. The institutions were shut down in the 70s and 80s. People with developmental disabilities from institutions, today, they live like everybody else, either at home, or in a small group or in a school, together in an area where everybody else lives. So there are no institutions left, this is from this time.
During the 70s there was also another discussion of disability policy in Sweden There were demonstrations and so on from the disability movements. There was also accessibility requirements too which would have elevators on houses and those kinds of things. Also there was a discussion about education in schools and so on.
And then, during the 90s – in 1994, there was legislation about personal assistance that was endorsed, that made it a right for people with severe disabilities who have personal assistants to have it 24 hours a day. This is quite huge and ambitious legislation.

There should be accessibility in traffic systems and public accommodations by 2010. And also have requirements and assurities that this will be accessible…little bit similar to your (U.S.) legislation.
Disability policy today, is much more globalized than before. You see the influence of other countries, other international documents and other countries legislation. Now most of the focus is on the Convention, the United Nations Convention (CRPD) and how it should be implemented in Sweden. Of course that is an expectation of the convention is very big.
It will be very interesting to see how development will be when it comes to theUN Convention. I think that this kind of requires a lot of cooperation between ministers in different countries and also the disability movement to the discuss the convention and how it is implemented.
This is a law that is unbelievable when you look at the convention, it has really come true so far. I mean, it usually takes much longer time to legislate a convention of this promise, imagination. But it took a couple of years and so many countries have supported it.

So it would be a lot of work to find the best way to implement it and a measure for it. So I think that the national exchange of information and cooperation both among the governments and disability movements is more or less necessary to make it a success.
This has been Day Al-Mohamed and guest host Lars Lindberg with your Day In Washington - Disability Policy Podcast, hoping that you stay well and stay informed. For more information about disability policy or to comment please visit: DayInWashington.com or call 206-888-6009.
(Day in Washington closing music)
Beth: And that will wrap us up for this episode. Remember you can visit our website at disability-411.com, to read the transcript of this episode, to listen to past episodes, including the one with J.C. Hutchins, and to read all the transcripts from the past episodes. Don’t forget to email me if you like, disability411@jinkle.com, especially if you’d like to do your own segment for the show, or if you have any questions, comments, ideas for future shows, anything. I just like hearing from you all. So, until next time, this is Beth Case with the Disability411 podcast.
The Disability411 podcast is protected by the Creative Commons Attribution Non- Commercial Share- Alike 3.0 United States license, which means you can share our podcast, you just can’t make any money off it. Visit our website at Disability-411.jinkle.com to find show notes, past shows, and transcripts of all the episodes as well as useful links, blogs and much more. Email us at disability411@jinkle.com. Music by The Brobdingnagian Bards is used with permission.