(photo of Alison testing streets on her scooter by Linda Spurdle)
I first met Alison when I was presenting Citilab at an event in Birmingham, UK about building digital districts. Alison was sat on the front row and afterwards we were talking and she was looking at my face very intensely - finally I realised she was lip reading. At that time I was involved in a lot of stuff about digital inclusion as well as participatory events, but meeting her made me realise that we weren’t even close to social inclusion of people with disabilities and led to me questioning much of what I was doing.
(text transcript of of whole video at bottom of post)
Alison runs Pesky People which started off as a blog to rant about disability access from a digital point of view because it was being completely ignored. The Digital Britain Report mentioned the word access in terms of getting people online, but nothing about about the fact that 99% of websites are completely inaccessible, and as we are now moving into the continual steam of videos and pictures and websites steaming events live it is becoming more inaccessible. What Pesky People does is try to keep the issue visible. Alison says that, “the peskiness of it is really challenging companies to get things right by blogging and sort of naming and shaming them”. She started phoning the PR department of companies saying, “by the way there is this blog post about your company and this is how bad is about it and er, what are you going to do about it?”
The idea of Pesky People is really to flag up issues, and it started with a personal experience. Her first blog post was about being miss-sold a mobile phone from Orange and she called it “The Future is Not Orange!” "The worst thing was I got a mobile phone that didn’t work with my hearing aids and my mac. And then every time I went back into the shop about four times within 3 days I was getting worse and worse customer service and to the point I was surrounded by four members of staff screaming at me and basically having a go at me and I was trying to say “I have a PUCK code you will cancel this contract, you will … basically it was a 2 year contract”, she explains.
“The blog post then got picked up by Radio Shropshire and I became the main news item at 12 noon on the radio and that really got things sorted out.”
The impact of social media
From this experience, Alison realised that blogging and social media could really have an impact and then it snowballed from there to the point of taking on issues and giving other disabled people a platform to blog about issues. There is economic sense to it as disabled people are worth £80 billion a year but, "we get treated really shoddily by businesses and websites (being inaccessible) … so I’m sort of a pain in the backside to the issues and going ‘I can’t access any of the online steaming of events and webinars because they are NOT subtitled! ".
“Without my hearing aids I am profoundly deaf,” she continues, “So I have to find ways of accessing this information whether it is by twitter or reading lots of text …I am also dyslexic so that throws it further.”
Pesky People doesn’t make her a living at the moment but she has had funding to take the whole access/digital issues beyond a space where, instead of trying to search all the kinds of access information about all various spaces, with the development of GO GENIE they are trying to find a way of getting it all on one page, on a mobile or online and the idea is to crowdsource that info.
She is trying to keep digital and disability really connected and trying to use technology to move forward. “So the way I have been employed is through the funding to do this project, but it’s been really hard and all what I do as blogging as Pesky People I do off my own back voluntary and it … people have a big perception that because it is disability we are quite happy to give you all our advice and knowledge for FREE!! Quite frankly it really pisses me off we are treated like this!”, she says.
Alison is trying to talk to the Arts Council, NESTA (who both gave funding for the prototype of Go Genie which Pesky People is developing) and Technology Strategy Board to ask why isn’t their content accessible and why they aren’t putting out any guidelines to make sure that anything which is built includes that audience. 20% of the population is disabled, 1 in 3 people know somebody who is disabled and 10% of the UK population are carers. Disabled people feel they are going to be locked out of everything to do with digital technology.
“I started Pesky People off because I was applying for jobs, getting shortlisted and not getting them and I thought I cant find work, well I need to find ways of getting me work!” she explains.
Her background is in Disability Arts and she was Artistic Producer and Site Manager of DaDaFest in Liverpool 2008 dealing with the council, health and safety as well as the production side. She has worked mainly with disability arts organisations, particularly in community engagement as well as Programme Manager for a contemporary arts producers where she went from being in an organisation with an annual budget of around £60,000 to an organisation where each project budget was about £50,000 which made her realise that there was a lot of money being put into contemporary arts but, “if you were in disability or anything to do with social exclusion we were not seen to be important.”
Alison has been personally criticised for raising issues such as an exhibition which didn’t list disabled access to the many venues used. If she wants to go to events she has to negotiate with the organisers to discover if they will provide access. “If you go to an event, you just get booked up, have a cup of tea and you’re in…I have to wait till the last minute to know whether or not I’ve got a place because they’ve sorted out the access and then I have to scrabble around for accommodation and travel.” She points out that there are only 200 British Sign Language interpreters for the UK, but 70,000 deaf people who use it as a first language. She herself uses it as a second language as she was born hard of hearing and became more deaf in her 20’s. All this makes it difficult to go to events but it’s also hard to get people to understand that disabled people are good at what they do and she asks why she shouldn’t be given the same level of respect as a consultant? It’s very hard to make a living and she’s been very close to just giving up many times.
Pesky People got good funding from the Arts Council, Nesta and Nokia most of which has gone into development costs but the support and infrastructure to make it into an organisation has been really hard to get. People don’t get involved because they need to be paid so she asks how she can she take a project with huge potential like Go Genie and make it work. Policy makers should take a holistic approach - funding around a project, not just paying the bills but providing expertise in things that she can’t afford to do such as business advice, funding help etc. Disabled people are at a disadvantage for funding none of the TSB (Technology Strategy Board) information is accessible, often leading to the missing of deadlines.
She wonders why, if so many people love the Pesky People project, why isn’t she getting more support such as mentoring. She has had great mentoring including from the organisation who gave funding for the accessibility of the Pesky People website and are still giving mentoring support although the contract has finished. She finds it hard to fund raise for her own position while she is doing so many other things in the project.
I ask Alison if she’s investigated crowdfunding. She has but it’s yet another thing she needs to do and she mentions her problems of dyslexia within the context of research and project writing. There’s a problem of coming across opportunities by accident, which means that you miss many.
Both Sides of the Network
We talked about the impact of cuts to benefits in the UK which are aiming to remove disabled people’s entitlement by declaring them able to work. Alison answers that, in the first place there are no jobs and that secondly employers won’t employ disabled people as they see it as too much hard work, despite statistics showing that disabled workers work much harder. The scaremongering around the cuts is pushing attitudes back to how they were in the past. She describes the difficulties for getting benefits currently while the press is portraying easy access, but the disabled are seen as easy targets.
I asked Alison about the effect of Internet access and social networks to disabled people, if they are useful or another obstacle. She thinks they are a combination of the two. “I wouldn’t be able to do what I do for Pesky People if it wasn’t for Twitter for example. That got me my networks & connections and ironically in the early days it was the people who weren’t disabled but who really wanted to understand the issues and wanted to support the issues; that was invaluable for getting me known.” She explains how twitter has enabled her to get changes made by mobilising networks and engaging with organisations, highlighting specific problems and suggesting solutions. However, the flip side, as she sees it, is that the more social media is used to raise issues, the more people may switch off due to the image from the media of the disabled being benefit scroungers anyway. She also points out that trying to use the Internet and social media to make a living has been scary and feels that people expect everything for free.
“In future, the policy makers have to challenge and on the one hand you have public open data and involve different elements that are free online and they have to be paid for and the people who are doing the work - have to be paid. So there has to be a way of properly supporting projects and doing it holistically.” Without a proper foundation she feels many people reach a stage where they give up.
I asked about the importance of her network, whether it is mainly through twitter or from other areas too. She answers that it’s mainly Facebook, twitter and going to events that make her network, and that in the early days she was lucky to go to a lot of digital events which gave her the knowledge and understanding that she needed. “And what I love about using twitter especially is that I can have direct contact with someone quite senior within an organisation that you wouldn’t have if you went through the usual channels,” she notes, giving some examples of how that has worked for her. She adds that twitter is also accessible rom a Deaf point of view, she has instant access and is on the same level as everyone else.
Mostly people respond to her when she approaches them this way. “Most people are very approachable and I think it is because I’m raising issues and trying to get a balance on how I’m contacting them so I’m not just going ‘you did this!’ It’s like ‘you really need to sort this out because it’s a big problem.”
Go Genie will hopefully help by making it easier for people to find the access information and facilities to places they want to go to easily and be able to contact them without a lot of hunting around for the information. It is a website, mobile app (on iOS and Android) and it’s a downloadable app on the Symbian platform. "The whole thing is around having all the short cuts for access information so you have got the access symbols, you have got contact details, so you can email, go straight to the web page with the access info, contact them on Facebook and twitter or looking at OpenStreetMap, print it all off - you can add to it, you can say exactly what the access is like. So an organisation might say that their access is fantastic but then someone visits and sees the lift is broken and they can’t get up to the first floor. So there is a way of saying “I’ve been here 10 times now and the lift has not worked once.”
It’s trying to capture that information and actually provide a really good way to know where you are going from an access point of view but the objective of it help is to help everyone, its not just about disability access, its about family friendly, is there a lift, is there parking close by and answer all those things.
We finish off with her explaining her current situation: "We are in the Race for Apps competition and I have got no doubt (you know) competitions like that are important to raising profile and HOPEFULLY find a way of getting investment and further support.
The flip side is we have run out of money as the funding has come to an end, I’ve got no developer, there is just me and trying to find another way of getting more resources to make it really happen.
It’s there, its live it works. You can even go onto the website on your laptop and reduce the screen size and it will turn into the mobile version, so it has got some nice features about it.
And we are going to be hopefully working with OpenStreetMaps so they are going to start documenting access to come up with some sort of guidelines to how we can put access onto all their OpenStreetMap so that is going to be opening an new door, like getting all that information more widely available and how we can use it within Go Genie.
Trying to keep going and just get that next phase going and (money)."
Full video transcription provided by Alison:
Chris: Hi err… Who are you? Where are you? And how do you attempt to make a living on the edge?
Alison: HI em I’m alison smith i run pesky people … www.peskypeople.co.uk em (cough)…
And it really started off as a blog to really to rant about disability access from a digital point of view because it was being completely ignored (em) and Digital Britain Report mentioned the word access’ in terms of getting people online but absolutely NOTHING about about the fact that 99% of websites are completely inaccessible (em) as we are now moving into like the continual steam of videos and pictures and websites steaming events live and what have you it is becoming MORE INACCESSIBLE so, what we are doing is really trying to keep the issue up there and and at the same time the peskiness of it is really up is really challenging companies to get things right by blogging and sort of naming and shaming them and (err) what I started doing … was phoning them up … phoning their, their PR department up and saying “by the way there is this blog post about your company and this is how bad is about it and er, what are you going to do about it?”
So for example The BBC Doctor Who Experience, a visually impaired woman went down the, the, Doctor Who Experience in London, told them she was blind, got handed an Itouch with subtitles on it(!) She’s standing there with a white stick! Got asked for her driving license and it so of went worse and worse. So I saw some tweets about it what she was saying on twitter and contacted her and She did this FANTASTIC blog post about what went wrong but also what they needed to do to to make it right.
So I thought hang on I need to tell the BBC! This it is really important there are lots of Doctor Who Fans and em she’s a big Doctor Who fan there’s got to be a way of sorting this out. THREE phone calls later I’m talking to the Head of BBC World Wide branding! Em to be honest (Philip Flemming) he was brilliant I emailed the blog and within three days got a really really good response and then they sorted out the access and invited Samantha (@dalekette on twitter) back to to see what they had done and really give her a brilliant experience of being there - which is the way it should have been in the first place!
And em …
Well the whole thing of Pesky People is really to flag up issues, and it started with me personally em, my first blog was about being miss-sold a mobile phone from Orange and I called it “The Future is Not Orange!” (Chris giggles) Alison: thanks. Chris (giggles).
The worse thing was I got a mobile phone that didn’t work with my hearing aids and my mac. And then every time I went back into the shop about four times within 3 days I was getting worse and worse customer service and to the point I was surrounded by four members of staff screaming at me and basically having a go at me and I was trying to say “I have a PUCK code you will cancel this contract, you will … basically it was a 2 year contract”
The blog post then got picked up by Radio Shropshire and I became the main news item on the 12 noon on the radio (giggles) and that really got things sorted out.
I then realised hang on … blogging, social media can really have an impact and then it snowballed from there to the point taking on issues like Samantha’s and giving other disabled people platform to blog about issues means that we find a way of sorting them so … there is an economic sense to it as well we are worth £80 billion a year yet we get treated really shoddily by businesses and websites (being inaccessible) … so I’m sort of a pain in the backside to the issues and going ‘I can’t access any of the online steaming of events and webinars because they are NOT subtitled!
Without my hearing aids I am profoundly DEAF!! So I have to find ways of access this information whether it is by twitter or reading lots of text …I am also DYSLEXIC so that throws it further.
The whole thing Pesky People and it makes a living (giggle) - in a sense … at the moment it doesn’t, but I have had funding to sort of take the whole access digital issues and take it beyond a space where instead of trying to search all the kind of access information about all various spaces with GO GENIE we are trying to find a way of getting it all on one page one, one thing, so you just link and press it where it is on your mobile or whether you are looking at it online so tying to crowdsource that info.
So I’m trying to keep disability, digital and disability really connected and trying to use the technology to move forward. So the way I have been employed is through the funding to do this project, but it’s been really hard and all what I do as blogging as Pesky People I do off my own back voluntary and it … people have a big perception that because it is disability we are quite happy to give you all our advice and knowledge for FREE!! Quite frankly it really pisses me off we are treated like this!
So I’m trying to talk to Arts Council, NESTA (who both gave us funding for the prototype of Go Genie) and Technology Strategy Board to say:
Why isn’t your content accessible? Why aren’t you putting any guidelines to make sure anything is built has that audience? I mean 20% of any population is disabled … 1 in 3 people know somebody who is disabled … 10% of the UK population is carers, you know it is a really HUGE AMOUNT OF PEOPLE and yet we are going to be locked out of everything to do with digital technology, the new products that are coming online and even as basic as watching BBC iPlayer or ITV iplayer the subtitles for me are never working right. I stopped watching THE VOICE because the subtitles were about 10 minutes behind everything that was on screen (distorted) … continually a message coming us saying that the subtitles would appear again in “52 seconds” which to seem to coincide when where every anybody was singing … you know it really ruins the viewing experience it it really makes me think well they don’t care about us because otherwise they would … and they would think about access at the very beginning!
Even the programme Space Programme, The Space Arts Programme I’ve been … had a Skype conversation with them … they were like ‘oh we have a very limited budget and two developers’ so I said well what are the BBC and Arts Council doing to make sure there were standard to make your content accessible for your audiences?
Well in a way what I’m doing campaigning and for what I’m trying to do in a practical way is get things to happen and that is being a big challenge as well as actually earning an income form it. I started Pesky People off because I was applying for jobs getting shortlisted and not getting them and I thought I cant find work well I need to find ways of getting me work!
My background is in Disability Arts and I have done everything from being Artistic Producer of DaDaFest in Liverpool 2008 City of Culture where we shut off 4 roads and I was Site Manager as well dealing with the council all that side of things health and safety as well as the producing side…
My whole background is in working in with mainly disability arts organisations particularly community engagement so everything from running a national programme of creative writing workshops and performances in Scotland England and Wales for Survivors’ Poetry, to trying to set up a Disability Arts Forum in Northumberland … to being a Programme Manager for a contemporary arts producers where I went from being in an organisation with an annual budget of say £60,000 to an organisation where each project budget was about £50,000 and it you know it was a real eye opener it made me realise that there was a lot of money being put into contemporary arts but yet if you were in disability or anything to do with social exclusion we were not seen to be important and em that was quite an eye opener.
With Pesky People I’ve found, I’ve gone from doing a blog that was very personal and putting myself at being very open to being criticised which I have been quite directly that I was jeopardising an arts organisation funding for raising access issues.
All I was trying to do was say why was the Home of Metal Exhibition not displaying the access information for all their venues then they were expecting me or anyone who was disabled to go FIFTEEN different websites to find that info! And all they needed to do was put it on one page on their website.
To (em) being at Hello Digital where … the organisation forgot to book sign language interpreters so I couldn’t access any of that day’s event I think the interpreter turned up at half past one!
It just if I book for an event I have to negotiate these organisers whether or not they will provide my access. If YOU go to an event you just book, turn up get a cup of tea and you are in.
I have to wait to the last minute to know whether I have got a place because they have sorted out the access, then I have to scramble around to sort out my accommodation and travel!
And … there’s only 200 interpreters for the whole oft he UK there are 70,000 Deaf people who’s use BSL (British Sign Language) as a first language.
I use it as a second language because I was born hard of hearing and became more deaf as I went into in my 20’s… my hearing went worse in my left ear went down to match my right ear.
That makes it quite difficult about going to events but) to get people to understand that you are quite good at what you do.
I shouldn’t have to ask you to give me the same level of respect as a consultant
I’ve even had an organisation … trying to say that because the length of time on the project why don’t I not claim the last quarter of the money they owed me …
So em, it is hard enough earning a living. It is bad at the moment, quite frankly I’m not really earning.
The amount of times I’ve been THIS CLOSE to giving up - even recently is really really hard
With Pesky People (it’s me) I got funding from Arts Council, NESTA and even NOKIA
So within just over a year and half I had £ 25,000 from Arts Council, followed by £20,000 from NESTA, followed by £25,000 from NOKIA and most of that money has gone into development costs (it is so expensive).
But the support and infrastructure to help me do this and become an organisation has been really, really hard to get.
I still need money - people obviously don’t want to get involved because they need to be paid. So how do I take something that has the potential to be absolutely massive with Go Genie and the whole thing around it becoming a disabled version of Get Satisfaction. It has got huge potential and yet I can’t get infrastructure in place to make that happen quicker.
Go Genie ideas are getting taken by other people! There are accessible apps out there - good on them but - there but I know what we are doing with the crowd-sourcing will got a lot further because of the flexibility and agility of it.
It has been really really hard be just one person driving this and I have been getting burnt out.
If you look at what policy makers should be doing it should be a whole list of support to do. If you are going to fund an idea or prototype fund around it not just about the builds! And that way issues from about intellectual Property-right Trademarking - things I can’t afford to do.
To the whole business infrastructure being able to pitch at events and being able l to go to the right funders and investors.
And (inaudible) me doing pesky People from a disability point of view I am at a complete disadvantage because none of the TSB (Technology Strategy Board) information is accessible for me to work out what I need to do to apply for funding!
You have to jump through so many hoops just to register and by the time you have done that you have missed the deadline.
… The lack of building in the criteria … involved so accessibility has been taken at it’s heart.
So its a real combination of things for me. It about … if I talking about Pesky People people say its great we love what you do and we think it’s really important - then why aren’t I getting more support?!
Mentoring - I found my own mentors in the early days of setting up Pesky People, Nick Booth gave me really invaluable advice. I got mentoring support from Unltd which was only £4,500 that actually included £1,000 access costs and that helped me make Pesky People website really accessible - that funding was in 2010 and they are still giving me mentoring support today and that makes a huge difference but I’m not getting it from anywhere else!
So unless … doing fundraising stuff like everyone else but if you are trying to say right ok I need to do this for myself and that is really hard when I’m trying to
> Keep the build going so that Pesky People and Go Genie really happens;
> find a way of networking and crowdsourcing element of it;
> finding the investment and fundraising opportunities;
> trying to network at events and really get known so people can connect up with me and then I find … as one door closes another door opens
All those sort of things take time and effort and that is a team and I am one person.
Chris: You were talked about crowdsourcing have you looked at crowdfunding?
Alison: I need to do that … part of the problem has been my dyslexia everything is up here and you need to get it down into a structure order on paper. I need to get that done, but yes I need to do crowdfunding, and the big question for me that I have been trying to find the answer to lets say we need X amount of money what do I give in return? Who do I get that advice from? Mmm Or do I just do it take the risk and see what happens.
I really need to look into it.
That is the other thing …
You come across opportunities by accident then on the other hand you sort of missing them because there is so much going on.
I’ve missed applying for funding opportunities because things have been so busy and then I forgot about the deadline … you know …
Chris: What is the effect of the cuts in the UK, the cuts in disability, how bad is that? How is that affecting your community?
Alison: Em the, reform … the welfare rights bills reform in particularly in taking HUGE numbers of disabled people off and saying that they are eligible for work. One there is no jobs out there, two employers wont employ a disabled person they will see us as too much hard work, they wont see that we can actually do the job when even statistically research has proven that we will work five times as harder than anybody else. Never mind we have these disability and access issues.
Both Sides of the Network
The welfare cuts are scaring people its not just about cutting the money its the attitudes and scaremongering in the press. I think attitudes have been shoved back 40 odd years.
I know as a kid anything around disability you were OVER there, in a corner in an institution! Em, I even remember my dad saying, trying to get support that it means would be classed as disabled what do you think about that, I was nine at the time.
I didn’t understand what the big deal was and now it’s like … they’re (disabled people) are challenging what’s coming out from government - they are trying to say there is this huge fraud less than 0.05% and yet they want to get 20% of disability people off Disability Living Allowance!
As a Deaf person looking at their new criteria I won’t get Disability Living Allowance and when I did get it before it before it took me FIVE years to get it, FIVE years of appeals. So they say these benefits are easy to get it is utter rubbish!
But that is what is going into the papers, that is what people are reading and that is what people are believing!
So for me being a disabled person and being very public about being Disabled and Deaf - that I have also have hidden disabilities I’m not just deaf (em mean that in a nice way!)
That there needs to be a way of balancing an all they are doing is seeing us as easy targets …
It is cutting education, its going to cut support in the communities, its going to cut organisations that are supporting disabled people. An and it’s like so what do they want us to do get back into the workhouses!
I mean that’s what a lot of us are thinking. That … we are NOT seen as being valuable enough to be a completely in society especially if people are on benefits.
Chris: Is the internet any … has there been a change in anyway … is it a way out could it be a way out for disabled people (depending on the disability of course)
Alison: What in terms of the way of using the internet?
Chris: Yes you began Pesky People as a blog and saw you could make it bigger and hopefully make a living out of that … er … is internet access, is social networking - are those thing of any use to - is there a future there or are they just more obstacles.
Alison: A combination - em … I wouldn’t be able to do what I’m doing with Pesky People without twitter for example - that got me my connections and networks. Ironically in the early days it was more so people who weren’t disabled who really wanted to understand the issues and also wanted to support the issues.
Em … That was really invaluable in getting me known em you know to the point … a brilliant example is the National Digital Inclusion Conference which is happening at the end of the month.
When I contacted them (in 2010) and said I wanted to attend … they weren’t going to … I got an email back two weeks before the conference eventually with a reply even though I applied before Xmas and they eventually got back about March (2010).
There weren’t going to book BSL interpreters because their deaf access would be restricted to induction loops and plantypist (speech to text transcription on a screen).
So I got on twitter and just said ‘national digital inclusion conference is not accessible is in … doesn’t include deaf people!’
Getting that to the attention o the funders and attention of people going and there was an outrage about it. I wasn’t just thinking about me I was thinking about anyone else wanting … not just about me.
They had to backtrack! And they had to get book interpreters at very short notice which fortunately they did.
When I got there the first morning it was like … you are streaming live why aren’t you streaming it live you have got a plantypist that can go straight on to the internet, you have got BSL interpreters you can put them on the internet!
I am glad they took me up on that! So that 2010 conference was the FIRST digital event that was fully accessible with online streaming from a Deaf point of view! With Audio Description that is another kettle of fish so any video content whether it’s audio described.
That was a really massive boost to us it was like hang on it is just as simple as telling people about it very publicly!
So then wasn’t just stuck at home an complaining to your friends you have got a huge platform to really get issues out there.
But now the flip side of it because of the welfare reform bill and all the issues around that how do we … how do we get the issues out there and get the attention it deserves without it being like ‘here we go again!.
And that is a challenge!
I mean the all the stuff going around the Spartacus Report is fantastic and really proven how WRONG the government’s been on things and how their own research has been hiding fact.
But the flip side the more it’s out there are people just going to be switching off from the issues because we are just a bunch of benefit scroungers anyway! You know?
Alison: Em I mean, the big thing with making money point of view … from earning a living side… quite frankly I’m NOT earning a living properly.
It’s been very scary and it’s hard to find a way to get that big step forward and really I really do feel there is a big perception level is that people expect you to do it for FREE!
Alison: I mean, that is the great bit about social media is that we help each other but we all need to be able to keep the roof over our head.
And I think that is something that, in future, the policy makers have to challenge and one the one had you have public open data and involve different elements that are free online and they have to be paid for and the people who are doing the work - have to be paid.
So there has to be a way of properly supporting projects and doing it holistically.
Not just about doing the build, you are funding the infrastructure of the build but you are also funding the infrastructure of the organisation or the people around it, And whether that also includes mentoring support it gives a proper foundation to … otherwise, things stop n and people give up! You know I’ve been that close so many times even recently.
Chris: How important is your networking and that?
Chris: Your network is mainly through twitter or it’s from other area?
Alison: Its mostly Facebook, well twitter and more so now Facebook, em … going to events. I mean, I mean I was … lucky in the early days of Pesky People I got to go to so many digital events it really did give me the knowledge and understanding that I needed.
And I mean see now when I look at arts organisations looking to do things in digital and its like they DON’T have that foundation … em so for me all my networks are, its a real mix its not just disabled people it’s also organisations and community groups and charities it’s a real mix mix bunch.
And what I love about using twitter especially is that I can have direct contact with someone quite senior within an organisation that you wouldn’t have if you went through the usual channels.
I went to a Futuregov event which was around, the whole issues around the benefit system and how that could be improved.
And the idea was it bit of sort of a hack … lets see what we can pull together and em met the guy responsible for introducing universal credit and then I told him oh by the way I’ve been contacted by a Deaf woman who has just had her benefits cut because she didn’t phone the job centre yet there is no minicom number or email number for her to contact them! She is profoundly Deaf with two kids!
So he was like ‘oh you can contact your job centre by … whatever’ … that doesn’t happen!
So being able to have that contact and email him direct and go by the way that this has happened again…
I got no doubt that her benefits got reinstated so much quicker
(Chris murmurs in agreement)
than it would have had if she had to try and the person saying ‘you didn’t come in!’ and ‘I was ill, and I couldn’t contact you and you don’t give me … the best means for contacting me for my disability!’
If they can’t get it right on that level what hope have you got if the government going right all benefits, claims online, everything will be done online but they have no infrastructure in place to really take on the access issues at the same time.
So … with twitter for me especially means I can have direct contact with people that I would never have been able to!
And it’s also its accessible obviously from a Deaf point of view, I have got instant access and I’m on the same level as everyone else.
That social media and the internet … when it works and it’s accessible.
Chris: When you contact these people … through twitter or Facebook people that you would never normally reach do they respond to you?
Alison: Mostly, yeah my golden rule is I treat people with respect, I don’t think I’ve ever sworn on twitter if I find somebody offensive I unfollow them!
If I get things wrong I apologise straight away em … and I have had happen a couple of times!
Most people are very approachable and I think it is because I’m raising issues and trying to get a balance on how I’m contacting them so I’m not just going ‘you did this!’ It’s like ‘you really need to sort this out because it’s a big problem’.
At sometime today I’m going to be on the warpath about the fact that Coldplay … Coldplay are performing for the end of the Paralympics and the big issue is that none of the ticket online ticket providers like Ticketmaster and See Tickets have a really easy way of if you are disabled to book tickets - you have to phone them!
Or in the case of Coldplay at Arsenal Football club (in June 2012) you have to wait FOUR HOURS after the tickets are sold out to see the access information come up on Arsenal Football Club website! Then you have to fill in, download a form, fill it in sign it and return it. You can’t even book your tickets over the phone or by email! Everybody else just tick! a couple of buttons and got them!
In the case of @dalekette who is going to see them in London at the Emirates Stadium they have put her … allocated her a seat within the wheelchair accessible spaces, bearing in mind she is partially sighted she can’t even the stage even with the equipment she uses!
So what she should have done (as she told me) is paid DOUBLE the price for the tickets so not just paying for herself but paying for her PA so that she could be in the standing area at the front with everybody else.
They (Arsenal Football Club) would not allow her to get tickets for that area!
So Coldplay are really big supporters of disability issues they have got a number of band members who are disabled … its like well they are really supporting and really raising profile of disability access they do a lot of gigs with Scope (note should be Mencap) and yet when it comes to going to their gigs the infrastructure behind it like the promoters and the stadiums and venues … are completely letting us down. You can’t just physically book tickets easily like everybody else!
So there is going to be place for Pesky People! Because issue like that coming up so can flag it up and get things sorted then it has a bigger impact all round.
Like, One Call Car insurance refusing to give a Deaf woman car insurance and after doing a blog post on Pesky People the publicity was enough for them to say we will give you the car insurance and make sure that there is a we have a national system so that you can contact for breakdown service using a text message system.
I mean it is not difficult!
But you know…
It would be nice to get that funded and supported in some way it wouldn’t just be one or two issues it would be quite a lot and that is what I hope Go Genie will help do.
It won’t its not just about the access information all down in one page it will be about … here is what we can do to sort it out report it! it will go straight to them.
So if 30 people are complaining about the same issue then they realise hang in it is a problem … if there are 30 people across 30 stores complaining about the fact they can’t find the wheelchair accessible changing room as it has been used as a store room for example as NEXT does.
Then it’s a real issue that can then … people power that whole crowd sourcing stuff comes into play again.
Chris: So Go Genie is an app you are building? What is it exactly?
Alison: Its a website, mobile app (on OSX and Android and it’s a downloadable app on the Symbian platform.
The whole thing is around having all the short cuts for access information so you have got the access symbols, you have got contact details, so you can email, go straight to the web page with the access info contact them on Facebook and twitter or looking at OpenStreetMap, print it all off you can add to it you can say exactly what the access is like.
So an organisation might say that their access is fantastic but then someone visits and sees the lift is broken and they can’t get up to the first floor.
So there is a way of saying “I’ve been here 10 times now and the lift has not worked once.” for example.
I go to see gigs at the Glee club in Birmingham I know to sit in the first three rows to the right because the lead singer’s mike is always in the same place and I know where I can to sit to lipread.
So it’s trying to capture that information but actually provide a really good way to know where you are going from an access point of view but it sort of it helps everyone its not just about disability access its about family friendly, is there a lift, is there parking close by and sort of answer all those things.
And mostly use crowdsourcing to get the content in.
Chris: How far developed is that:
Alison: It’s live!, its’ a prototype! It works! It gives me grey hairs!
It’s, yeah it’s working.
We are in the Race for Apps competition and I have got no doubt (you know) competitions like that are important to raising profile and HOPEFULLY find a way of getting investment and further support.
The flip side is we have run out of money as the funding has come to an end, I’ve got no developer, there is just me and trying to find another way of getting more resources to make it really happen.
It’s there its live it works. You can even go onto the website on your laptop and reduce the screen size and it will turn into the mobile version so it has got some nice features about it.
I’ve got some great ideas about how it can move forward and how it can be used.
And we are going to be hopefully working with OpenStreetMaps so they are going to start documenting access to come up with some sort of guidelines to how we can put access onto all their OpenstreetMap so that is going to be opening an new door like getting all that information more widely available and how we can use it within Go Genie.
Trying to keep going and just get that next phase going and (money).