Video: Denise Stephens on Multiple Sclerosis at Scripting Enabled London
January 5th, 2009This is the first video of the talks at Scripting Enabled in London last September. Thanks must go to BBC backstage for filming, the Yahoo Developer Network for hosting and the Opera Developer Network for the transcriptions. Take it away, Denise:
Transcription courtesy of the Opera Developer Network
Christian Heilmann: Give a big hand for Denise. She’s, well, not nervous and all. Here we go. Everyone, thank you for coming.
Denise Stephens: Hello and yeah, I’m pretty nervous so please bear with me. This is my first ever public speaking. And right, OK. Let’s get started. "Enabled by Design meets Script Enabled." I think this is a very simple equation, quite nicely sums up, well, what Scripting Enabled is all about and that’s technology plus good design equals scripting is enabled. Hi, my name’s Denise and that’s me there over the crutches.
So I guess you’re wondering how I ended up needing crutches in the first place. Was it a) due to a skiing injury? Was it ) due to falling off a table while I was dancing on it? Is it c) because I have Relapsing Remitting Multiple Sclerosis? Or d) is it all of the above?
Yeah, well it’s C. I have Relapsing Remitting Multiple Sclerosis or MS as it’s also known. MS is a neurological condition that’s unpredictable, variable and different in every case. So what sorts of barriers does this cause?
As well as the more visible mobility problems that I experience one of my main symptoms is extreme fatigue. This can affect me in many different ways. It can cause extreme tiredness and make it hard to concentrate and can exacerbate some of the other symptoms that I’m about to describe.
Sometimes my eyes go a bit funny and I’m only one of many who has a visual impairment. Just like to point out this picture is in honour of the fact that it’s talk like a pirate day and I wasn’t feeling brave enough to do my whole presentation in pirate speak so I’ll just do my token thing by saying "ARRRh!"
This can also include blurred vision, double vision and color distortion. This is where colors to appear to be altered, for example, red’s can appear to be pink. But it’s not always my eyesight that’s affected.
Sometimes I feel like I’m wearing Mickey Mouse gloves and at other times, I can feel, I can experience, numbness or altered sensation in my hands. Just like Mr. Jane here, sometimes I’m a little bit shaky and this can make coordination and fine control movements extremely difficult. As well as being extremely frustrating and annoying, this means that typing, selecting from drop-down menus and clicking on icons can be a bit of a nightmare.
And sometimes my hearing isn’t as good as it should be. It appears a bit muffled. And sometimes I suffer from vertigo. A common misconception is that vertigo is a fear of heights and this isn’t actually true. Vertigo is a balance disorder that can cause dizziness and make you feel like you’re spinning or swaying even when you’re standing still. I have to say it’s not a particularly pleasant experience. I definitely wouldn’t recommend it.
So all of these things can make life completely unpredictable but one thing is for certain, every day will be different from the next. And my needs will change from day to day. Everyone has different needs and abilities, so how do you meet everyone’s requirements at the same time?
Well, this isn’t strictly possible, but one of the approach is universal design. Universal Design takes inputs from all users by taking as many needs as possible into consideration in the design process.
However, sadly, this doesn’t mean designing products that can be used by everybody. Sadly there is not a single product that can fulfill all user needs at once. Here’s an example of how Oxo uses universal design to make people’s lives easier. This here is a potato peeler from the Oxo Good Grips range. Its design is ergonomic, it’s got a wide handle and with a non-slip pressure absorbing grip. This sort of increased design means it is accessible to a much wider audience.
So why not apply this approach to online systems? Well that’s exactly why you’re here today. So by now, I should think you’re wondering, what is Enabled by Design and why am I so interested in Scripting Enabled? Enabled by Design is developing an online community that would support anyone that can make adjustments to their lives.
This can be through as a result of disability, injury or personal identified needs. We want to practice what we preach. And it’s extremely important our website will reflect this. And that’s why we’re so excited about Scripting Enabled. Just like to say, thanks for listening and ask if anyone’s got any questions? There’s my contact details, if anyone needs them.
Christian: OK, we managed to finish in the first presentation, five minutes before it was supposed to start, so we’re off to a good start!
…but that’s basically what I wanted to do. I don’t want anybody just show boating, going up on stage like "hey, look at what I have done". It’s more important that you can ask questions and if you want, what’s on your mind. So to fire it off a bit, we will have this young gentleman over there, run around with a microphone if you have any questions, but Denise if you can just quickly give us a run through what Enabled by Design, what the site and the community would be like or is like at the moment?
Denise: OK. Basically the idea for Enabled by Design is to make assistive equipped more accessible to people but also to make it more aesthetically pleasing and to actually meet individual’s needs. And so really, we want our website to reflect that ethos. I suppose, one of the main things is that we want a whole experience to be enjoyable and fun because quite often I find the whole disability experience can be quite a serious one and kind of lacks the fun in it and enthusiasm that other design sites might have. And we’re in the process of building up our community and we’re hoping to improve their screens to get people involved and users of the assistive equipment and designers, as well as healthcare professionals and get them working together and trying to figure out on how these relationships would work. How they would work together.
Then picking up the right state for us to build our website. We want our website to be as accessible as possible. Basically that’s why I really wanted to come today, to find out about web accessibility and hopefully take some things home to transfer onto our website.
Christian: In your pitch, you showed an online video as an example to actually show people with different disabilities each of the videos with all systems there’s one of the things that they show, and I was one of the judges of the competition, one thing that I really, really loved was that there was a problem: somebody, I think said he had problems with the cutting of carrots. I would love to cook but I really have problems with my eyes because my hands are really shaky and I can’t really do that. So somebody else found this really cool product that basically is not really that amazing (my mum had one of those four years ago) basically a carrot and you just put a knife on top of it and you chop your carrot that way. So you got this bit button to press rather than just using the knife. But other people have totally forgotten about that product.
So somebody in the crowd could described this in the answers of the comment question. But they just uploaded the video of someone using it in the kitchen, that’s showing, hey, this is how you order it and this is the URL, you can order it from.
And it’s such a wonderful, inspiring story that something that is inaccessible as online video actually can help people just explain something quickly that five pages of textbook wouldn’t have done. So that’s an interesting approach and I would love for more designers to talk about Enabled by Design as well. Especially for product designers, because what you said was also like, just because I need some living aids, that shouldn’t look like a cheap hospital.
Denise: Thank you.
Christian: You got the same with assistive technology as with assistive software, it is so often it’s so unwieldy to install. I think, like for testing purposes, I’ve tried to install JAWS 4 and it asked me for a floppy disk. When I get MacBook Pro in Parallels, floppy disk is not really an option. So are there any questions for Denise?
Woman 1: Well done Denise, I think you did very well for a first time speaker. I’m wondering, what problems that your community have enlightened you about your present website? What’s the feedback been like?
Denise: Well, I have to admit, we’re in our very first stages. We’ve only just recently re-launched our website. It should be, actually it will be on Monday, so it’s quite early on. But we’re very, very interested in getting people to use our website, test it out and see what sort of problems they come into problems with. We’re really keen about listening to our community, finding out what difficulties they’re having and trying to find ways around this. So as I say, at the moment our interim site is there, it’s kind of a in its starting stages. We just want people to just basically share ideas and talk about their experiences and start building up that relationship and so it’s a work in progress, as it were.
Christian: Could you talk about the camp that Enabled by Design was built on, what that was like?
Denise: OK. Well, we kind of came through the Social Innovation Camp route. We took part in the first ever Social Innovation Camp. They had a call for ideas which was basically how can you use web technology and the social web to meet social needs. I’d had my idea for Enabled by Design but it didn’t have that name at that time. About, I suppose in 2005, as a result of my own experiences and I was to diagnosed with Relapsing, Remitting Multiple Sclerosis and underwent a series of disabling relapses. After this happened, I went to hospital and eventually went home but was assessed by an occupational therapist to try and look at different ways of keeping my independence.
And also I was having mobility problems, difficulty manipulating objects in my hands and my eyesight wasn’t particularly good either. So it was great looking at the assistive equipment, finding ways of being independent and trying to do as many things as possible for myself. Because I already felt like I had given up quite a lot. I had to give up my career. So I really didn’t want want to give up anything else. I just want to keep my independence as much as possible.
So all of this equipment was fantastic and I couldn’t fault it in terms of it did what it said on the tin. But, at the same time, I was quite frustrated by the fact my home ended up looking like a hospital and all of the equipment I was given, it was quite dated, clinical and as I say, it’s not a good if your home looks like Victoria Hospital. So I was keen on making a change and I’m trying to kind of disrupt things and a little bit I suppose.
So then, I have this idea but I really didn’t know what to do with it. So eventually, my friends [Name] . Sorry. These are New York kids and he met [Name?], on the way back from Social Innovation Camp and they had a chat about what she was trying to achieve. And so he came back and told me about it, and he said, “Right, this might be a good time for you to actually put your idea out there and see what people think.”
And so, yeah, that’s basically it…the rest is history. I put my application in and I think from 80 to 90 submissions, I think they picked to about six to attend the weekends and it was a fantastic weekend. There was a lot of energy and it was kind of a peep at the sharp edge of social needs, hackers, designers all coming together to work on these six different projects.
And I suppose when I first started at Social Innovation Camp, I didn’t actually know what to expect. I got worried in case I didn’t end up with the actual team I wanted or that they would be interested in my idea or where it was going to go.
But basically, we worked on the idea for the Saturday and the Sunday and then on the Sunday afternoon there was a show-and-tell session. Where everyone had to pitch their idea their proof on concept and talk about where they wanted to go with their idea on the future.
And so, I wasn’t feeling quite brave enough to stand up in front of everybody. So Dominique, who I’ve just introduced you to, he was the voice of Enabled by Design. So, and yeah, and we were awarded first prize. But the other projects were fantastic and the energy from that weekend was great.
So I would just like to say that in December they’re running the second Social Innovation Camp, and so if anyone’s got any ideas that they want to share. Or if they just want to get involved in the weekends, I’m sure they’re going need hackers and so, yeah, get involved. I definitely recommend that.
And so yeah, the events at Social Innovation Camp. I’m sure Christian can tell you a bit about it as well..
Christian: I think she covered it quite nicely. It was quite great to see and also quite inspirational to this day and for tomorrow, as well. It’s great to see that the people just went there and said like, “Hey, we want social change, we’re have a problem,” and was like this is the people for example that is a real pain, not really convoluted process. So they wanted to make like a website where people can rate their prison visits, not like they’re involuntary ones, but the ones where they visit people in prison. A bit like: rate my hospital patient rating, these kind of things.
It was interesting to see the energy that all these times you saw that Denise sitting down there are like 12 guys around her, all hacking along. And setting up Druple and setting up a little system and discussing if they will go for video upload from the beginning of the pitch, or if they already goes.
I saw the energy flowing there. I saw the geeks like yeah, Druple I’ve got these 5,000 plug-ins. So we can all plug in, great. Actually, that’s what I wanted to show, and this is where I want to go with this. And this is the kind of left-right thing that I want to be able to happen. I want basically Geek speak stopped from over developing things that nobody needs and other people basically listening to geeks.
Another thing was to gather a festival. One of the things, one of the winners there was talking about fighting, knife crime in teenagers with some ID system which is yeah, a daring attempt, that’s good. And then they’re like: when you design agencies and if anybody is in the audience here that can build us a website, that would be great.
We got funding now, so we want a website to talk about the knife crime in children. How about you make a Facebook group? How about you make where the kids hang out, and actually talk to them there. When you have a mass of people to talk to, when you have a community, you can think about building up a website.
We always go for the fast, quick technology solution, but we don’t really understand the problems of people. So in terms of technology, therefore the geeks in the audience, so let’s quickly have a show of hands. Who’s going to be here tomorrow for hacking? Who here considers themselves more a designer? Good.
Who’s a hard core hacker? Yeah, you people don’t count. I interviewed you, I know. And anybody who is in a project manager role or managerial role and came here to learn about this things? Good, we got two or three. I think, because if we come up with great ideas and companies don’t give us the money and time to do it, that’s a bit of a problem.
So in terms of for the hackers in the audience, when you staff work at the moment, you bought yourself a new computer. Well, that’s mine, but the other one’s there. And what was the first things that you found that helps you a lot when you solve problems? What were the biggest problems of several websites, although you can even change them if you want to but as you try to build systems around them? What were the biggest interface elements or frustrating moments for you? Not the BBC…
[Laughter]
Denise: Well, I have to admit and for one thing, I suppose using my computer the first place was a bit of a barrier. And having a desktop or a clunky laptop isn’t actually ideal. So, it’s a good excuse I suppose, but a Mac kind of meets my needs and that’s good as an excuse, isn’t it? And…
Christian: Or other soft notebooks from other vendors.
Denise: Oh, yes. I’m sorry, other vendors. I’m not used to this…But basically a lightweight computer that meant that I can actually take it with me, actually do things with it, than rather just be attached to my desktop all the time. In terms of websites, I’m not going to name any. I’ll just think of general things like maybe having screens that are very busy and a lot things that are going on.
It’s very distracting, especially when you got a visual impairment and your eyesight is quite as good. You find it hard to see some things. I suppose if you got a really busy screen, you’ve got lots of things flashing, lots of things going on, things popping out and it makes it impossible to try and figure out what it is actually you’re trying to do and navigate around the page.
Another thing can be that icons to click on can be very, very small which is all very well if you’re very dexterous. But I suppose at the moment I’m not a very dexterous person. I can’t really… my hands are quite numb and it’s my fine movements that are very shaky. So it does make it very difficult to navigate around the page and you can end up clicking on the wrong button and being taken away what you want to see, which is very frustrating.
And sometimes with, I suppose, icons on the toolbar, I sometimes, you can accidentally… If they are too close together, you can accidentally click on the other so you’ll end up opening another application which is also frustrating because you end up having to wait for thing to load. Then close it down and then get back to what you were trying to do.
Christian: My favorite irony there is when you have these font re-sizing tools in a 10 × 10 pixel button.
Man 3: I was just wondering, in terms of methodology or just philosophy… I might be getting too specific, too early here. But do you like it if people try to fix as many problems in the design as possible, just in a single design or do you like site that is can be adapted to your specific problems?
Denise: Well, as I was saying in my presentation, I quite like the idea of the universal designs. That’s kind of meeting as many people’s needs and taking into consideration as many people’s needs during the design process. So I suppose it’s quite useful if our website is as accessible as possible. And if there are people still having problems, then, well maybe they need to look at other ways and trying to adapt their experience. But really it would be lovely if we can have websites that sort of set-up from the beginning to meet as many needs as possible.
Christian: It’s also a bit of a problem, isn’t it? Because you’re run into say accessibility issues with the systems you provide. I mean, it’s always the way like it and we have a preference panel that can change your website around. But finding the preference panel and that now navigating that form, it’s the other issue. But my geek answer to your problem would have been, yeah, icons are too small but they are keyboard accessible. So are you using a lot of keyboard navigation?
Denise: I have to admit, no I’m not. Because I’m not… I’m still learning. But I definitely need to learn those sort of things. But also, typing can be quite difficult for me, so keyboards and shortcuts can be…it’s all very well as I say, you’ve got good control of your fingers, but if you’re shaking or you’ve got tremors, you can end up pressing keys multiple times and shortcuts don’t work as well. So it’s kind of bit of both really.
Christian: That’s a bit of a problem. Because most operating systems have sticky key settings, for example, or have like universal access as it’s called on a Mac now. There’s great, great tools in there. I mean, if you don’t tell people where they are or if we don’t explain to people where they are, I blame software vendors as much as I play in PC World and other computer shops. Like when you sell a computer, people show you the graphics accelerator, what games you can play on it. What people don’t show you like hey if your mom wants to use it, the one with the glasses, she can actually turn it on and you can zoom it here. So we have to get that a bit more out into the main market to get it more interesting for people as well. Is there a question here?
Man 4: Yeah, I’m talking about not using a keyboard although it is hard to navigate by mouse. Are there, maybe, third parties or third tools, whatever, you can use to make it easy to use either of them or is it just a marginal thing to make it easy…
Denise: I suppose that’s the thing. I don’t actually know about everything that’s available. So I need to be educated as well about what’s out there, what people need. I’m just kind of a lay person, trying to make use of my computer the best way I know possible, I suppose. So that’s another reason why I’m here today is to find more what’s out there, what can be used. I was talking to Chris about a few things I ended up buying. It’s got a really useful tool that it can read text to you. But I wouldn’t have heard it about that until I spoke to Chris.
So yeah, it’s kind of about education as well and it’s going to tell people what’s out there, what’s available. So I’m sure there are sorts of things out there that people which they know about them, they’re quite hidden away for certain things.
Male Speaker: And I think let’s add a chain of websites that is going to make an ideal, a very good example you can use very well.
Man 5: Scriptingenabled.org!
Denise: Of course, Scriptingenabled.org
Man 5: Very good.
Denise: Oh, just trying to think. Oh, I supposed Facebook’s quite good in terms of it’s quite, well set out and I know where to fins things. It’s not too busy. Well, it depends on how you set your profile page, I suppose. If you’re adding loads and loads of add-ons, then it will get a very really busy. You’re in control of all of that. It’s like, that’s quite good. And I like the fact that it just makes the world kind of more open so I can keep in touch with my friends, it makes the world more accessible to me. So like, in that way it kind of balances out to the fact the columns I suppose. It’s actually a good application to use.
Christian: What do you use the web for? And you don’t have to answer that if you don’t want to!What’s your main purpose to go on the web? Maybe, some people go for gaming, some people go for checking if the tube is down again. Some people go to the BBC to watch their great programs? What is your main driver for going on the web?
Denise: Well, I found this when I was particularly ill, when my mobility was really, really bad, I wouldn’t be able to get out the house. I would be sometimes bed ridden even sometimes just stuck at home. I’m would be completely bored. And I wouldn’t really want to watch the morning TV. It’s just not what you want to do. I know a lot of people say "Oh lucky you you can watch This Morning", but it’s not true.
Denise: But basically the web is my lifeline to the outside world. So now I can communicate with my friends, find out what they’re up to, I can use Skype, I can chat to people and find out about the accessibility of venues before going to them. Say, let’s go to this concert. Let’s check it at the Internet to make sure I won’t have to walk up ten flights of stairs before I get to where I want to go. It’s a really useful tool to do all sorts of things. I suppose, also things like listening to music, anything really. So I suppose I’m really quite average in terms of what I use the web for.
And also as I’m now starting up Enabled by Design, I’m kind of using the resources that out there in terms of setting up a business, learning about the blogging world, and learning about technology I’m quite new to this technology sort of stuff.
Christian: Are there any big MS self help group sites?
Denise: Well, the main one is the MS Society and the MS Trust as well. They do a lot of research work which I’m really kind of interested in and speaking to the MS Trust. To see if they are interested in doing a small article about Enabled by Design and kind of explaining what we’re trying to do. So I’m kind of hoping that by getting in touch with different charities, different organizations that we’ll be able to raise awareness and get people completely involved as well.
Christian: Cool. Any more questions or well, yeah?
Man 7: Hello. Just checking. When you do something on your computer and Chris had mentioned that you go buy a computer you are shown the fancy whizzy stuff you’re not sold. Some of the tools are already built in the computer. I was just pondering the idea… for people who are going to make use of some of those tools, how are they going to get to know about them? And some of it could be by pushing education down from, it could be the vendors, operating systems, websites, whatever.
Some of it is getting down to the personality of the person who’s actually using the computer whether they’re motivated themselves. I have, in endless discussions with geeks, when there’s lots of stuff built in so next time people will discover it. But to discover it, people have to have the motivation to go and explore. And where can people who have disabilities, visual impairment, probably they’re not exploring because they had some bad experiences in the past. They’re just too scared.
So I want to put the question to you. With the people you’re working with, people you’re aiming at, what’s the general kind of approach of people? Are people motivated and want to go and explore and discover or have their bad experiences in the past impinge them doing that?
Denise: I suppose, they come in two camps really. The group that you’re talking about, who kind of feel disengaged through everything, feel like they’ve already kind of tried to give it a go and it’s not worked. So, they’ve given up and aren’t willing to think things differently. And three of our projects, we’ve kind of come across people who kind of like, Oh, why try to re-invent the wheel? Why try to and change things? It’s just the way it is. And I suppose if you provide education and make that readily available, it’s basically quite nice that there was kind of almost like a tutorial application that you could hold up as soon as set up your computers, so you can figure out what your computer can do in terms of accessibility.
Because I’m sure that there’s all sorts of, I mean, nice little things that you can use in terms that would make everybody’s lives easier. Not everybody, you might as well know… I don’t know. You might download a book off the Internet. That and if your computer can read the text to you, then, that’s almost like an audio book.
So there’s all sorts of things that people can use their computer for, but they just don’t realize. I suppose, I’m probably in between the two groups. I’m kind of still learning and I want to learn. There’s a slight difference in terms of I still want to go and find out what’s available this is getting to the people that just feel like oh, it’s rubbish, I think it will work and that’s because they’ve had bad experiences in the past, unfortunately. Does that answer your question?
Man 6: Thanks for answering.
Man 7: And just a quick one. As one of the problems also, I mean you have like Windows and it’s like you learn that once. It’s then the the same thing when you go from computer to computer progress, every single website, however has it’s own idioms of design. It’s like everything’s always laid out in a different way. Where as application on specific operating system, very often has similarities between them. So I guess it’s probably difficult. I think that’s where designers have to think like one of them who is coming up with an most innovative design. Also come up with a little bit like… well what is the standard? What is a recognized design pattern that really works well, because that’s one of the requirements as well. How do you feel about that?
Denise: I think that design is really important from what I’ve been learning. We’ve got better back end kind of things that are going on but the front end of design is the first thing that people come into contact with. If you’re feeling bombarded, your senses is bombarded by your website, you might just walk away from it and say it’s too much for me. I’m not even going to go and try and see if I can use this. You can’t even find if it is an accessible website in the first place. So it’s both design and the techy background stuff needs to kind of work together and to make the experience much easier.
Christian: Quick plug in that case, on the Yahoo! Developer Network, we have a design pattern library that can be reused to build these designs before you actually come up with your own layouts. And all are user tested in our systems and used in our live systems. And all of them are licensed Creative Commons. So all of them have an accessibility section as well that explains the accessibility impacts of these automotive panel of animation of those exists. Sadly enough, they don’t quite full respect. They get all these feedbacks about "yeah, that looks really pretty but aren’t really blue" rather than like "that’s a great concept for a main market". Everybody loves this from the perspective of the person with MS or as a person who is blind and has a problem.
So, look at those and if you find something there, please email us on the Developer Network and we will put them in there. Because the license is Creative Commons and they are meant to be augmented and to be added to. Any other questions?
Man 8: Hi. You’ve talked about websites that you find particularly useful, particularly accessible. I’m just wondering about what you like, what you think in terms of attractive websites. Because I don’t have any particular access need although I’m shortsighted and I find myself attracted to websites of beautiful design with tiny fonts. I increase the fonts and increase the fonts and often break the design. So I’m just wondering, you know, when you look around the web, do you find yourself coming across lots of websites that you think actually that a really fantastic, really beautifully designed website and does it get you thinking about… apart from what we talked about with larger icons, menus, things like that, what you would like to see in terms of attractive websites.
I think that there’s always sometime of a feeling that you can make an incredibly accessible website that… Because of that you might be not be attractive to other users. So I’m just wondering what you might regard in terms of attractive, even beautiful design?
Denise: I suppose I’m a little idealistic. I would hope that is possible get an attractive website is accessible. I think things like very, very small type in the first place. I don’t really see how that benefits anyone, really. If you are taking all those things into consideration from the very beginning, you can maybe… I’m not designer myself so I’m speaking maybe naively, but I would that if you kind of concentrate on those things in the first place and integrate all the accessible options in terms of font size from the beginning then you can incorporate it into the design. I don’t see why accessibility has to be ugly.
Christian: That’s actually quite an issue. Isn’t it, I am going to Atlanta. I complained to one of the designers of at @Media when he was on the panel talking about great designs. I was like, oh, everything you showed, was wonderful but not maintainable and really, really hard to read for someone without 20/20 vision. And I know him so well that we’re now going to do a talk together in Atlanta. We can say make accessibility sexy. Well, I’m coming from the tech side and he’s coming from the design side, how can I make things for accessibility or for people with disabilities onto design to make the whole design more inclusive, more interesting.
We still have a question of how to do that, how to make it sexy, but other than… but what we’ve come up with much. It will be there. I think it’s very much important that we challenge designers, as well, to say like it’s all in the beauty, pushing the envelope of technology, there’s also a beauty in limiting yourself to a user need.
Christian: So, we’re almost at the time for cookies and coffee. So, I want to thank very much to Denise. You’re finished here, you’re off the hook now!
Denise: Thank you.
Next up was 
