Exchanging houses during vacation time, sharing car with strangers, designing a lamp for one’s own living room in a FabLab, proposing a packaging design for a favorite brand, inventing a solution to help a company innovate, writing a article in wikipedia or a hotel review in a tourism site, ordering with neighbors organic vegetables… collaborative practices between individuals or between individuals and businesses are multiplying around us.
Equipped with Internet and the Web, strangers can interact, share, and cooperate at distance, consequently opening new development perspectives for our patterns of consumption, production and creation.
Therefore companies are invited to revisit their methods of organization, the way they innovate, their customer relationship as their clients become actors, as well as their models for sharing value.
Orange, as a major player in the information economy, is interested in these emerging transformations, which constitute both challenges and opportunities.
The report “Synthetic overview of the collaborative economy“, coproduced by Orange Labs and the P2P Foundation, provides a thorough mapping of the actors involved in this cooperative economy: for the first time, nearly all the dots of the emerging collaborative economy, and their inter-relation, are presented in a single overview.
P2P Foundation: Researching, Documenting and Promoting Peer to Peer Practices
The P2P Foundation is a non-profit organization, a knowledge commons and a global community of researchers and advocates that monitors the emergence of peer to peer dynamics in every field of society and human activity. Peer production, governance, and property models that are characterized by open access, participatory process of governance, and property formats that guarantee universal access are monitored. The aims of the P2P Foundation is to act as a global community of researchers, focused on understanding phenomena such as open innovation, co-creation and co-design, crowd-sourcing and crowd-funding. Of particular interest is the intersection between the newly enabled ‘horizontal’ social processes, with the pre-existing, more ‘vertically’ oriented institutions, such as corporations and governments. In our research collection we have particularly focused on the sustainability of open practices, i.e. on open business models.
I’ve been doing a series of interviews for Edgeryders – a joint project of the Council of Europe and the European Commission, led by the Social Cohesion Research and Early Warning Division at the Council of Europe. I’ve been investigating how people make a living on the edge, or if they do at all – very pertinent (and personal). Here’s what I was working on:
How can people make a living on the edge as technologies change quicker than regulations and new business models disrupt old standards? While young (and not so young) people are defining a new society through their networked interactions and processes, often the obstacles to their ability to make a living are bureaucratic or outdated ways of doing.
The Edgeryders platform is organised through a series of “campaigns” linked to specific areas of the work of the Social Cohesion Research and Early Warning Division. These campaigns are made up of “mission reports” written by members of the community which are then studied by ethnographers working on the project. The Quest For Paid Work is part of the Making A Living campaign which examines issues around employment.
My brief was to identify people who have experience in the area and share their stories with the wider community, looking for common methodologies, tools and tactics. The people spoke for themselves in the videos and I did summaries of the interviews in language appropriate to the members of the community who mostly have English as a second or third tongue. The videos were not meant to be professional quality but rather quick & dirty, using the resources and bandwidth available, to capture the reality of how technology is used (and sometimes fails). All the videos are in this playlist below and you can read all of my posts here.
I was joint-facilitator with Jovin Hurry (who did most of the heavy lifting) at the Making a Living session of the Living On The Edge conference held at the Council of Europe in Strasbourg on June 15. This post about the session is the follow up from the Edgeryders platform
The session was divided into the 5 areas of the Making a Living campaign and Edgeryders distributed themselves on the 5 corresponding tables: Paid Work, Social Innovation, Recruitment, Allies and ?. Every 15 minutes they rotated to a new table/topic, except for one person who became the table host and filled in the newcomers on the dicussions so far, ensuring fresh ideas and perspectives.
The topic coordinators reported back at both the end of the session, and in the Dynamic Reporting session using the papers from each table which were used to harvest the ideas of the Edgeryders who rotated through them.
This video features the “table hosts” summarizing the discussions and possible outcomes:
Olivier is part of a social enterprise called Platoniq and is based in Palma de Mallorca. Platoniq work on various projects mostly based on ICT, the latest of which is Goteo, a crowdfunding platform with crowdsourcing options so a project is not just asking for money but building a community. Platoniq have never believed in living off a service in Internet so they live off offline services through workshops, consultancy for social enterprises or cooperatives – developing tools on Internet and these tools bring them reputation and that is the base of the business which is giving services to public administrations, which is hard right now in Spain, and also to private entities.
Goteo is the result of two years research on alternative economy models based on Internet – P2P credits, microcredits etc. Goteo is based on crowdfunding and crowdsourcing with open DNA, only helping projects to be founded if they have, for example, open design, free software, open hardware etc., concentrating on these new business models. More than crowdfunding, it’s like micro credits which are paid back in the form of educational packages, code, design etc.
Open licensing is totally integrated in the Goteo platform so any project using it has these licenses right from the start. When a person helps a project through Goteo, they are helping to open up processes – an example is an open shoes project which is not just about buying shoes but putting money to “liberate” parts of the process like the design so everyone can build their own shoes.
Platoniq always have two approaches, online and offline so Goteo was conceived without code at first and this influenced the final design of the platform. It was really co-designed through workshops and other processes – which means it has more features and is much richer than other “similar” platforms. This is the capital that Goteo brings with it and is also where the money comes from, from workshops and not through the small percentage of money they get from the platform. The business model is selling services around it which is a common thing with many open practices.
Sprints & lemons
The enterprise moved from Barcelona to Palma de Mallorca in part because Susanne from the Platoniq team is originally from there and because it is nicer to live there. They have a garden where they produce their own tomatoes and lemons etc. and turn to the Internet when they need to know how to do something or share practices with other ecological producers. Before opening their new office they were spending half of what they spent in Barcelona, even though they had a free office in the Catalonian capital. Previously they were working with people full time in the Barcelona office but now they do sprints, coming together to work three days a month in a very focussed manner.
The crisis has produced a schizophrenic situation because there are lots of institutions that want Platoniq to help them develop participatory projects – they have less money than before and they think that participation will be cheaper and the users will provide the content. It’s a big mistake they have to fight. 50% of money they make is from institutions so it has been affected a lot by the crisis – if before clients were taking a year to pay, now they are taking two. However they are doing more workshops as crowdfunding seems to be one of the alternatives for projects to find a way of being funded. It’s important to use this moment to show that open models are much more effective and not as obsolete as closed ones, Olivier says.
Platoniq have both online and offline networks and are taking advantage of the fact that Mallorca residents pay half price travel to maintain them – meaning they can go to say, Bilbao, and work with interesting people for a few days, something they couldn’t do before. He thinks it’s necessary for people to meet each other and have a sprint from time to time and concentrate on the things to develop instead of having an online to do list – sometimes it’s good to be located somewhere and work with people for a few days and then to meet on Internet.
Testing the limits
A recent campaign on Goteo to fund a legal case against the ex-director of one the crisis-ridden banks in Spain has tested the limits of the platform – normally they have between 8,000 and 10,00 visits a day and with this campaign they had double that amount in the first hour, collapsing the server. So many people are fed up of the situation where banks always get public money whatever they do while there is no money for R+D, health, education etc. that they responded, he says. The server had to be changed in the middle of the campaign and the idea was to get €15,000 in six days, and they got it in 24 hours. If there hadn’t of been the server problem, they would probably have got it in 3 hours. It also created the schizophrenic situation of using a bank payment platform to go against the banks. It’s a very interesting sociological case to investigate, Olivier feels, being, he thinks, the first political/social campaign done through crowdfunding, and therefore a very interesting citizen evolution in his opinion.
Andrea is part of a for-profit company in Berlin called newthinking which works in the field of digital culture and society, doing web development and organising events like the big social media conference re:publica amongst other things. She now works part time for newthinking so that she can do other things as well – she is on the board of an association called all2gethernow, an event series for new strategies in the music business and music culture which aims to put the idea of music as culture back into the discourse. all2gethernow operates sometimes on a paid basis when there are projects such as one in association with the city of Berlin in September as part of Berlin Music Week, which will be a day of workshops for musicians. She also does things without any renumeration like her monthly radio show, organising a music festival which pays for itself but not for staff, as well as organising occasional concerts which pay something but don’t financially compensate for the time invested.
Andrea is trying to find a balance between doing things she finds interesting and making money. She says that it’s not an easy balance, but she feels lucky as she has had the opportunity to make money with her previous job, and she still has some money left which enables her to subsidise the activities that she’s interested in. She has done this on purpose by working longer on the recent job to buy time later to do things and be a bit more experimental, which is something she thinks is common amongst people who want to make things happen – “the idea of making money in one field to spend in another is one way to do it, because if you try to make money with everything you do, you are very dependent.” If you want to be free in what you do, you have to make the money elsewhere, she adds. She tries never to sell herself for something she finds completely useless, but has taken on less interesting projects as they have allowed her to do something else.
She is also a co-owner of newthinking and the company takes a similar approach too. In the past they have taken on things which were no so profitable but had a high content value, but it’s only possible if other projects bring the cash in, so staff and everything can be paid for. Her lifestyle is based on low expense which means this strategy can work, but Andrea is aware that this is possible because she doesn’t have a family.
“Making enough time”
Sometimes it is better to invest a little in a project yourself than to look for funding, she says, as often more time is spent trying to fundraise than on the project itself. From the experience of all2gethernow she has seen that it is very difficult to build something from a cultural, political interest and make it financially sustainable. Consequently it is very ad-hoc, bringing people in to work on projects once they have been approved financially, because they have not been able to sustain a permanent structure. They would have to start a service, like consulting, to be able to do so.
Andrea reiterates that she is not interested in making lots of money, that she wants to “make enough time” to do the things she’s interested in, and create a sustainable life. She considers herself to be in a privileged position as she can think about and do things she cares about and knows there are many people who don’t know how to do it, or can’t do it because they have a lot of children and despite working hard, still don’t earn enough money to make ends meet. Her way of living is more important to her than having a lot of money or the amount of goods she can buy.
Many needs and desires have been created artificially in society, she feels, meaning that people think they need to have a car, lots of electronic equipment, have expensive holidays – but they are things which can be solved in a way which involves far less money, people could live with less money if things were better organised.
Andrea sees that there is a lot of money in certain areas and much less in others and, thinking of the processes of gentrification and city development, creatives and people who do things are being used and are necessary for others to make lots of money. There is a question of whether money is really being distributed fairly and how can the system be structured so there is a much more equal distribution. Concepts like a basic income or regulation of the amount a company or person can accumulate need investigating, and although this is theoretically done through the tax system we probably need more systemic changes, she concludes.
I met Steve Lawson AKA SoloBassSteve at an Amplified event when I was investigating new formats for Citilab. He was so enthusiastic about everything it made me sick 😉 Later he was part of an Amplified team that came to work their magic on PodCamp Barcelona, and I saw his great skills at close hand. He and @Documentally have been two of my biggest influences on the use of social media to, well, amplify things.
(btw the video failed in the recording so I’ve replaced it with footage of Steve playing music – “the soundtrack to the day you wish you’d had”, as he puts it. Make sure you watch/listen to the video – there’s so much more detail in it, as there is with all the videos in this series 😉 )
Steve is ostensibly a musician, although he says his way or making a living is more a portfolio thing. “I get paid to be curious”, he says. adding that the musician bit is integral, the centre of the wheel.
He had a conventional music career after college – playing music with other people, doing tv, radio and theatre. At end of the 1990’s he played a solo show, recorded it & put it on his website – “people asked “when is the album coming out?”” At the time he was a music journalist and knew there was no money in recording a solo album as a bass playing instrumentalist, people who did it, did it as a loss-leader. Steve realised that making records was cheap and somebody was siphoning off lots of money, so he recorded his first album on a mini-disc. It sold and broke even very quickly and then started to make money. The conversation he was having with his audience made him think there was a sustainable way of making music outside of the mainstream music biz.
Sustainability became the key, he says. Musicians are normally told that they are not quite big enough yet, but doing it himself meant that nobody was telling him what success looked like. People started contacting him about gigs and he did a lot of the booking himself because he knew from being online that there were people in certain areas who would show up to a concert, and that 15 people paying 10 pounds each is 150 pounds, the same as he would get for playing at Shepherd’s Bush Empire. The industry was always more about making “someone” lots of money rather than you being able to live but he was discovering that he could make a living. He points out that he was lucky to be in his late 20’s and not a teenager or he might have succumbed to typical idea of success.
Steve had an emerging portfolio career. He had a great network of people he’d met through being a journalist. Also he was teaching, so he had a profile as a teacher and a writer about music education, and it became apparent that the aim was not to be a “full time musician”. Plus it was more stable as a lot of the tech industry collapsed around the turn of the century and a lot of people were out of work. Because he could switch between teaching, writing & playing, he only needed one thing to be paying the bills at any time.
Although he was worried about Napster at the beginning and didn’t use BitTorrent, the more the industry complained about these things, the more he thought they must be good if they were hated so much. Due to their history of never supporting artists, being monopolistic, abusive – being a protection racket more than anything else, if the industry said it was destroying their business model, Steve thought there must be something in it. As technology spread, more people were finding his work because he was visible online and he began inviting people to download his music and pay what they wanted for it. In part this worked because the industry was treating downloads as if they were cd’s and they were priced as if a physical object was created. This then became another story – there was the story of the music and the story of the access to the music, and it functioned as marketing used to.
It also enabled the musicians to be able to talk about their own sense of gratitude that people listened, because in the past the it was considered a bad thing if someone wanted to listen to you unless they paid. All of this happened from the way social media enabled musicians to talk to their listeners. Steve was using his website as a social media forum before social media was known and when Twitter came along he moved over and his community moved with him. He became a kind of music conduit within the community, becoming a fulcrum around which music makers and listeners discovered each other and music makers discovered that they were also music listeners too. He can generate sales of other music by his recommendations and thinks that in the near future this will be the main way people discover music. Steve mentions that he took his music off Spotify for many reasons around their model and cites Bandcamp as much more creator friendly.
Amplifying the conversation
Although he stopped being a journalist, Steve continues to write, mainly as part of Amplified – a social media facilitation project which developed from the Tuttle club in London, where a group of geeks who liked social media got together weekly to discuss what that meant for art, politics, education, business etc. Lots of events were taking place but the sole outcome from them was the guy on the platform talking. But the interesting stuff was people talking over coffee, so they came up with a system for documenting that, of shaping events around that other kind of output. It became a key thing, allowing Steve to solidify his thoughts about how social media works and the necessity of having a multiplicity of voices. This tied in with a widening of access to the tools of dissemination and creates situations where you have a brilliantly diverse culture of people making small scale contributions to what is going on, but when summed together is really important. “We were hoodwinked for the latter half of the 20th Century, with the lie that the only thing that mattered was numerical success – as musicians, in the media, in organisations, and we lost the ability to think with any integrity about what we were doing, and do it because it was important, not because it was successful”. The Internet allows us to reverse that and to find other small groups of people who are challenging the same issues he says.
It meant that in terms of making a living, as what could be broadly thought of as a social technology consultant, Steve was able to work on lots of little projects and make a living, rather than trying to make big money. Big money consultation for government tends to mean that the government doesn’t invest in ongoing work – they feel they’ve had their 1 day consultation with an expert, they’ve spent their budget on that and then continue to act as before, he explains. Steve was more interested in spending weeks at an organisation and completely changing the culture of how they use the Internet, rethinking transparency and opening up the sense of their core message to users, constituents and stakeholders.
To be part of a counter-culture to the entrenched positions and power structures doesn’t have to mean marching in Whitehall, being part of modelling a different way of doing things is really important, and to be able to do that and make enough to pay the bills most months is a good thing, Steve says.
Myths & Power
The power of the late 20th Century success myth of Hollywood and the record industry gives these players incredible power in debates about Internet legislation. History is written by the winners, so the account of what the record industry has meant to the world in the last 60 years has been written by the record industry, not by the millions of people who have been failed by it, Steve points out. So they show twisted statistics of what they made before and what they make now and say it’s all because of the Internet. But people are choosing other forms of physical entertainment media – games, DVD box sets etc meaning that music has lost out to other forms which look like better value. Also games and box sets are full of licensed music which the record companies never talk about.
The sales peak in the late 1990’s was people replacing their vinyl and cassette collections on CD, and a vast amount of money in the industry is about archive recordings. Outside of the official figures there is also a secondary economy of people like Steve whose sales are not registered by “official” bodies. The other thing the industry ignore is that the cost of making records is a tenth of what it was for the equivalent quality 20 years ago. Art making doesn’t have to be speculative.
The record industry has an enormous amount of money for lobbying, and Steve remembers that MP Tom Watson said he’d never seen more money spent on a lobby than that around the UK’s Digital Economy Act. Leaked memos showed the extent of their manoeuvres. “The big problem legislatively,” Steve says, “is that they do start to influence laws to make it impossible to do what we do. They don’t want a level playing field.”
Mining, scraping & ecosystems
Steve has a big problem with the model of Internet services that are provided for free while mining and scraping data and selling it to governments and advertisers. He would prefer to pay for services, thereby having services which provide meaningful conversation instead of having models based on data sale. Those services would then be more focused on, and useful to the user. If the selling of data is the business, and many users find it unacceptable, these companies will be become more pernicious, hiding what they are doing. He hates the fact that services surround his music with advertising and that makes it viable for him to make music – “I’d prefer a position where people can pay for the music they like, not pay for the music they don’t like, share it, be part of an economy or an ecosystem that wasn’t just about paying or not paying.”
I’ve seen many contributions from Pavlik on the P2P Foundation mailing list but I only met him for the first time at a hackathon in Berlin in December. I was intrigued by his choice to live without money and wanted to interview him for (Making A) Living On The Edge precisely because his concept of making a “living” is so distinct.
Pavlik is in Berlin at the moment participating in the Occupy Biennale and has been living strictly moneyless and stateless for over 3 years. He doesn’t use money, accept any nationality or use state documents which he sees as exercising his freedom of how he wants to live. He spends his time participating in different gatherings and projects, specialises in ICT and looks at how new tools can be used to change the way people collaborate and organise to move away from hierarchical structures towards flatter structures.
He first moved away from using money when he was living in San Francisco about 4 years ago and had the opportunity to learn what he actually needs. No living thing needs money, he says, but some people use money to get the things they really need. He came to the conclusion that if could get access to the things he really needs then he didn’t money – money only exists in relations between people he adds. “Money only exists in the human imagination – all the bills and coins and credit cards, if a small child looks at it, they see plastic, metal, paper, the money only comes from conditioning”.
At the moment Pavlik gets the things he needs through sharing. He works on projects without asking for anything in return, supporting causes he cares about. Similarly when people support him with food and shelter, he hitchhikes to travel from place to place, it happens just because people want to support him and what he does. No money is exchanged.
He sees that also with information technologies it is possible to move away from the dependancy on one system, especially what he considers to be very crippled and pathological state currencies with all they entail. It’s possible to move to a system with a diversity of systems which take relationships into account, he thinks – so if people know and trust each other there can be more liberal ways of accounting, not really accounting but supporting each other and trusting each other. In relationships with a little less trust it is possible to use different sorts of accounting such as resource sharing or some form of alternative currencies.
Pavlik only moves around the European continent and cannot leave a certain part of Europe due to his decision not to use state documents and he usually travels to participate in some gathering, staying with people, cooking and eating with them. If he stays in the country, he helps to grow food and in general sees his life as part of a wider ecosystem. He doesn’t like direct exchange – “I do something to get something”, preferring to do things to support, doing favours for friends and others, and in the same way receives support himself. In this way there is no element of debt, “I did something for you, now you owe me something,” instead, “I did this because I really wanted to support you”.
He finds that relationships without the use of money are friendlier but admits that he still faces some challenges, of how to organise things as people are used to using money they ask for money and they expect money back but although it involves more effort, he finds a higher quality of relationships which are more honest and more direct, more based on care and kindness. He sees the use of money as a vicious circle but thinks that by spreading a culture of not using it, more people can stop using it and can get to a critical mass. He believes it can become obsolete in a short time if enough people stop participating in it.
I asked him about other currencies, such as bitcoin. He says he doesn’t like bitcoin himself, and focusses on a diverse environment of different ways of accounting between peers, which may include monetary currencies, but he concentrates on a system without them. He sees bitcoin as a monetary currency and appreciates that people try to experiment but sees it as something, in the beginning at least, for geeks, and it doesn’t look at a larger ecosystem or relationships or what is needed to support certain services and resources, all problems which are similar to state currencies.
Economy vs Finance
Pavlik sees economy and finances as completely distinct – he considers economy to be relation and flows of services and goods, and collaboration and community whereas he sees finance as a tool to work with the economic relations. Therefore he sees a financial crisis as the system of mainstream currencies cannot work by design but he doesn’t see an economic crises as there are amazing technologies, 7 billion people who can communicate in real time worldwide, lots of resources still, and knowledge of how to reuse and recycle resources. There are some environmental challenges due to the misuse and abuse of resources and nature but mainly there is the problem of people getting stuck in the finances which have to collapse. He sees that those challenges bring people together to say that they don’t want to continue in that way. Often they can’t specify what they want to do differently, but they want to come together to discuss problems and how, collectively, different possible solutions can be found.
“The way I see these groups related to Occupy and other related movements is that people don’t have precise expectations of what we want, we just want to come together and look for solutions, different solutions for different problems”, he says. Instead of in mainstream political culture where the parties claim to have solutions to problems, the people there say they don’t have solutions but have certain ways of communicating and processes which may help find solutions. Pavlik appreciates the difference of saying, “if you face problems, possibly you need to participate in finding solutions, don’t expect Papa or Mama to solve your problems”.
Anne Wizorek has actually managed to make a living from her passion for communication while at the same time applying her skills to the things she believes in. Here she explains how:
Anne is a freelance consultant for social media, online strategy/project manager for mainly online projects. Her studies have nothing to do with any of that, she dropped out of university, although getting the diploma is still very important in her native Germany. Anne was always working, even when studying and realised that to finish her studies she would have to stop working, which would mean a student loan – something she didn’t want to do. She wanted to do something real, get something done and a degree in German literature wasn’t about that.
She became an online editor for one of the most popular German blogs and as part of that job became a curator/co-organiser at one of the most important social media conferences in Germany, Re:publica. She really enjoyed that job and it enabled her to explore what had started out as a hobby, a passion – blogging, using social media networks, and eventually she did an art project called PaperGirl Berlin – doing the event management as well as the blog and online communication. Anne had always done this stuff because she loved it but figured out, “OK, this is something that not everyone can do, it’s a very special way of communicating and not everyone can do it, although the tools are really accessible,” so decided to make a profession of it.
After those gigs finished she was working as a freelancer but was still craving the security of being employed. She says she was lucky because at that time she learnt a lot about communication and PR through being part of the team that organised SlutWalk in Berlin, doing the online communications and a lot of public relations which helped her a lot although she didn’t get any money for it – but gained experience which was much more valuable, even in terms of self confidence. After SlutWalk she got a job at an agency but realised it wasn’t how she wanted to bring her skills to people or help clients. She quit and luckily just after that was offered a big contract as a freelancer, a project she is currently working on.
Right now she is trying to decide if she wants to found her own company, apply for funding, look for an agency which is closer to what she wants to do or maybe team up with friends who have great skills. Anne was surprised to find out that there are people who need the things she was enjoying doing as a hobby. She doesn’t feel there is a way to educate people to do what she is doing so she realised she had a skill with which to help clients.
Personal networking has become very essential in getting jobs, and being recommended by people has been important too. She couldn’t make a living without both online and offline networking. She has found that networks are distinct in different places – she has just returned from New York where, as a feminist activist, she met many of the people whose books and blogs she reads and she had the feeling that the community there is closer and more supportive than in Germany. This made her think that she could change the situation as she thinks there are probably more people here who feel the same way. She wants to initiate an event and forge a community to get this kind of environment going in Berlin as well.
Taking to the streets
I asked her to tell me more about SlutWalk. It started in Toronto, Canada because at a security training session on the campus a police officer said women would be less likely to be raped if they didn’t dress like sluts. Students were so appalled that they initiated the SlutWalk – they wanted to provoke with the name but wanted to make visible that they are the victims and that society should, finally, be blaming the perpetrators. The event spread all over the world, to around 80 cities. It was a huge topic in blogs and finally Anne realised it was something that was missing: people spend a lot of time talking about things that are problematic but never take action, never “take it to the streets”. She did some research and found a few people in Berlin who wanted to start it, so she got in touch with them and a few weeks later was in complete SlutWalk mode. She says it was very intense but she learned a lot, also about herself and considers it a really great experience.
Anne feels that the Internet means that anyone, anywhere will always be able to find some sort of information about these issues and in the best case can make you more comfortable with whatever problem you have – you see there are other people who feel the same way. Before you feel completely alone and it is now easier to get in touch with people and give each other support. For her this development is one of the most important things that has evolved during her time online.
She feels that most of the policy makers and institutions are really far away from understanding the experience of people who have grown up with the Internet as a normal part of their lives. She sees a generational clash around some things like privacy – with warnings about not sharing too much information, for example, although she feels sharing can be very valuable, even if it’s painful, because then you can reach out to people who feel the same way. “We have to make sure, especially with all this paranoia going on in the newspapers and the media that by sharing information you are doomed, you’ll never get a job…..actually this is more about making visible what makes us human,” she says. It’s labeled as being a failure, she continues, so we need to make sure that people are not curating their online personas so much that only the positive things are shown. Anne gives the example of people whose Facebook timeline makes you think they must be really happy but when you talk to them you discover they’re having a bad time, even though they are posting about happy moments.
She still finds it incredible that she can just get in touch with people all over the world and have both global and local networks and points out the importance of “this way of bonding and empowering people is eventually always the reason for change”
I met Gerard and Raul in Linz, Austria last year at Ars Elektronika – they were setting up their project and I heard them speaking Catalan, it turned out that we all lived in Barcelona. Their presentation was hilarious as they explained how different technology is the most important technology depending on the situation – so one of those pens with many colours is the best tech on a Friday night as it enables people to copy the entrance “stamps” of a disco on their arms when they have no money. These guys are true “lifehackers”… they also made the “Golden Nica” I’m holding in my avatar picture.
(btw the video was recorded on skype over their mobile after all other attempts failed…)
Gerard Rubio and Raul Nieves are part of the blablabLAB collective and are currently Artists in Residence at Hangar in Barcelona. They formed the collective about 4 years ago. Gerard says that they have a cheap life, but have a lot of time, which is like their financial currency. They invest that time in acquiring knowledge which they then use to create projects and also to hold workshops to transfer the knowledge. Their latest workshop is on how to build a 3D printer, a printer which can print another printer. This workshop comes out of a project blablabLAB did on Las Ramblas in Barcelona called Be Your Own Souvenir which, unlike most of their projects, has given them the chance to earn some money.
Their projects are normally funded but most of the money goes on production costs. For example Haberlandt – “a vending machine for food crops, a bio-reactor for growing a superfood—Arthrospira platensis micro-algae—and an automated avant-cuisine machine”, had funding of 650€ but later it, and Be Your Own Souvenir, won honorary mentions in the prestigious Prix Ars Eletronika which funded a trip to Linz to exhibit the projects with further production. Haberlandt became very well known online and they received lots of offers to exhibit and began travelling and made some money from the project, something which normally doesn’t happen in Spain.
Any money they get goes back into the projects, so the aim is to break even. They usually begin with little or no investment, using materials from the trash like broken 3D printers. Although it is a limitation, it has created an ecosystem for them and meant that they learned new skills and gained new knowledge. blablabLAB is not a hobby, Raul says, but at the moment they have time and don’t need to earn a living from it. For now they are supported financially by their parents, do some jobs and get scholarships so have time to grow in exactly the direction they want. Later they will try to make a living from blablabLABs, although they think it will be hard. Both feel that the time they’ve invested in learning, acquiring skills and experimenting is beginning to pay off and they are getting more workshops and offers.
Reusing materials means that production costs are lower but they also see it as a political choice – reusing before recycling before trashing. I asked them about how far the Haberlandt project had come, it being an example of the blablabLAB ecosystem. They explain that the algae they generated in Linz was eaten by Gerard and during the winter they had about 3 litres of a hibernating culture which now needs to be grown. They are in contact with an active network of Spirulina growers in Catalonia but the main idea is to keep a little algae in case they need to take it somewhere for an exhibition. Raul explains that they have a meeting scheduled with the El Bulli Foundation of the renowned chef Ferran Adrià to talk about Haberlandt as well.
I asked if the crisis in Spain is creating more interest in the kind of things they do. Gerard replies that he thinks there’s more interest in the way they produce because it’s very economical and more people are going to be reusing stuff because they won’t have enough money to buy new things. They both feel there’s going to be a return to how things were done in the past – things that our grandparents did and ways of living, these ways of doing things disappeared, probably due to people having money, but they are coming back. They don’t feel that have set a precedent, more that things are becoming more like the way they work. So far the crisis hasn’t affected them very much, but they are more excited than scared about it. Things were already bad, but now people are seeing it and there is a chance for change – things like consumers cooperatives organising and buying produce direct from farmers and cutting out all the intermediaries, “these things are accelerating and being pushed very far”, says Raul. They are “very interested in the structures, human relationships, sociology and economic structures that can emerge.”
They see that the use of 3D printers can make a change in manufacturing and production, although it’s hard to predict how large, and point out that it’s important to create self aware communities of users who understand the issues around the use of the printers and don’t just create more environmental problems. Many manufacturers of 3D printers just want to sell large volumes and they see that open-source producers have more interest in the larger issues. They hope that someone will start a small business with the printers maybe creating jewellery or something similar.
Both Gerard and Raul admit that they do not have a good social media “policy”, citing the amount of blablabLAB things and other commitments such as studying and work, and feel they should take more advantage of the opportunities social media offers. They are heavy users of the Internet, checking out and following RepRap 3D printer developers for real time updates for example. Usually when they are working on a project they are just too busy and stressed.
(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 she says.
“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 in 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, she isn’t 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 from 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 aims to help by making it easier for people to find the access information and facilities to places they want to go to easily, and facilitate contact with 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?
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).