Technical Difficulties. Wear your scars with pride, we all have technical difficulties.

Technical Difficulties is new radio exploring the interactions between disabled people and society and breaking down the barriers and stigmas between the two. The series is produced by Tim Abbott; with Dolly Sen, Melanie Clifford and Tim Bonham-Carter. Transcripts are available below. The first series is archived here

NB: The transcripts are done by me, on the fly, and therefore are not verbatim from the recording.

This is Technical Difficulties and I'm your host Tim Abbott. We are live from London Bridge on 104.4 FM, online and Twitter @lightchronic.

This show will be repeated on Sunday the 5th but right now, it's 3.30pm on Friday December the 3rd 2010, the International Day of People with Disabilities and in the midst of the Disability History Month here in the UK.

The International Day of People with Disabilities is driven by the UN - full details here and has been marked every year since 1981 but the theme of this year's International Day of Persons with Disabilities is "Keeping the promise: mainstreaming disability in the Millennium Development Goals."

Opening the day from the UN in New York - where it is currently 10.30am, Secretary General Ban Ki-Moon said: Among the promises made by world leaders at the MDG Summit in September was a commitment to improve the lives of persons with disabilities. This diverse group includes people close to us - family, friends and neighbours. Indeed, physical, mental and sensory impairments are very common, affecting about 10 per cent of the world's population.

Disability is also highly correlated with poverty. People with disabilities account for roughly 20 per cent of those living in poverty in developing countries. Worldwide, they suffer high rates of unemployment and often lack access to adequate education and healthcare. In many societies, there are simply no provisions made for this group and they end up living in isolation, disconnected from their own communities.

Despite these obstacles, persons with disabilities have displayed great courage and resilience. But even as we continue to be inspired by those who reach the highest levels of human achievement, such successes must not obscure the difficulties faced by those who live in desperate conditions and lack the rights, privileges and opportunities available to their fellow citizens.

Governments need to do more to support people with disabilities. That means implementing the UN Convention on the Rights of Persons with Disabilities, integrating their needs into national Millennium Development Goal agendas which were tracking the Action Plan adopted at the MDG Summit, world leaders recognized that current efforts are insufficient. On this International Day, let us recognize that the battles against poverty, disease and discrimination will not be won without targeted laws, policies and programmes that empower this group.

Let us pledge to keep the promise of the goals alive in the community of persons with disabilities. And let us include them not only as beneficiaries but as valued agents of change in our five-year push to reach the goals by the internationally agreed deadline of 2015.

This is Technical Difficulties on Resonance 104.4fm - These are the open airwaves. Around the world, live and podcast on resonancefm.com.

A well orchestrated campaign of events in Australia started this 2010 edition of the IDPD, tracked by the crew at Melbourne community radio station 3CR - where it's currently half-past two on Saturday morning. Full details of the 364 events that took place are available here and details and audio of the interviews conducted by 3CR here. I would guess the weather was less of a technical difficulty for them than it is for us here in frozen, post-snowy London.

As an overview of how Australia saw this event, the blogger "The View from Down Here" posted Happy International Day here. And to TVfDH from Technical Difficulties, happy IDPD too.

I actually couldn't find any details of an orchestrated Asian campaign for Disability Day but did find a disturbing statement from the regional arm of Disabled Peoples International. They said "The international decade was launched in order to provide a time frame during which Governments and organizations could implement the activities recommended in the World Programme of Action Concerning Disabled Persons. Despite these efforts and the focus provided by the regional decade, the situation of persons with disabilities in the Asian and Pacific region, including East Asia and the Pacific, has not been improved as expected. To further address disability issues, governments in the Asian and Pacific region extended the regional decade for another 10 years". We are two years away from that second decade's conclusion in 2012 and yet it is 2010 and there's still no evidence - online at least - of any events so again I share with you a blogger's view, this time in Malaysia.

Well, personally I think events are important for raising the awareness of the outside world so I'm happy that the IDPD is being celebrated around the world and whilst I agree with Peter Tan on the desire to see deep advancement, I do think celebrating once a year is a good thing.

Here on this frozen rock in the north Atlantic and across the sprawling continent of Europe, we have been marking the IDPD although several events have been postponed due to the early snowfall. Community Channel is showing themed programming all day today. The Wellcome Trust is projecting Simon McKeown's Motion Disabled onto the pavement outside their headquarters on Euston Road from noon. The Welsh Assembly is hosting Words to Wales, live and then archived on their website. Disability Equality Wiltshire is holding a No Barriers Week through today and Herefordshire Council has also organised an event. I have to add at this point, sadly the snow has caused a postponement of an event which was organised in Hove.

At the moment, the Republic of Ireland has not yet ratified the UN Convention on the Rights of Disabled People!

Again, there is plenty of organisational infrastructure in Africa but not much evidence of events taking place today, aside from an externally organised event with Evelyn Glennie and a group of fundraisers marking the occasion on top of Mount Kilimanjaro for AbleChild Africa.

And finally we cross the pond, where the day has only just started to roll along. Hello to Christine at but you dont look sick .com in New York state where it is 10.50am, and all my fellow spoonies. She will be on this very show very soon. The US has not yet ratified the UN Convention on the Rights of Disabled People! Speaking to a disability advocate in that country, there is no evidence of an organised attempt to mark today, not even from the US International Council on Disability - although the North American member of Disabled People International has a website with statements and links to its local members here. I would give you more details but it was having technical difficulties being displayed when I looked.In fact, there is precious little evidence of events at all. Of course, it has to be added that the US does host the headquarters of the UN. That's not much of an excuse though... This attitude could be best summed up as a reliance on the UN's academic conferences, with no community events.

In the time available to me, I also couldn't find any organised events in central and South America but if I've missed anything, drop me a line.

Thank you all for listening, for the Technical Difficulties crew I'm Tim Abbott. We will leave you with the extraordinary Joaquin Rodrigo's Concierto de Aranjuez. On this International Day of People with Disabilities, wear your scars with pride and remember, we all have Technical Difficulties, goodbye.

TA: This is Resonance. 104.4fm in Central London and around the world at resonancefm.com and... it's a bit bizarre to be introducing my own show but hey, never mind. This is Technical Difficulties <Music: Caro Snatch - up with radiance> And this is Technical Difficulties on Resonance 104.4fm and lightchronicles.info, I'm Tim Abbott. This week could be the most personal topic we've tackled so far, given that most peoplwe get dressed at home - in a private setting so the show started with a gloriously uplifting "Up with radiance" from a friend of the show Caro Snatch, remixing Beccy Owen's The Deeps. Caro Snatch's album Til You're No Longer Blinkerered is out online.

In the next half an hour or so, myself and my guest Marlo Donato - who can hopefully structure a sentence slightly better than I just did - are going to touch on the Technical Difficulties of fashion and body idealism when you're disabled. We both reached a remarkably similar point from starkly contrasting starting points in terms of how we interact with things, things like fashion. I was born with a physical impairment due to brain damage during and shortly after a premature birth. Working together with an occupational therapist, I spent a period of my childhood learning how to put on clothes with my one fully-functioning hand. I've never been able to tie ties or laces and I may have even forgotten some things that I've forgotten how to do, or never knew how to do. I haven't generally considered myself disabled in terms of my access to clothing but occasionally, people do react oddly to seeing how I interact with clothes. I hope that makes sense. I guess if you're disabled yourself, it probably will. So Marlo, how did you deal with all those Technical Difficulties?

MD: Well, firstly I was different from you in that I was not born with my disabilities. Mine came over time. Some of them actually came over night. My disabilities affect the central nervous system and it has affected me in many, many different ways - some which probably a lot of people will relate to. My left hand at different points in time has been difficult to use. Not so much tying laces but as far as buttoning buttons or anything that needs to be turned. (laughs)

TA: Yeah, the buttons I can relate to. I basically do-up and undo shirts one-handed. It is a bit hard to even explain how that works. It's just a learned activity

MD: Yeah, basically what I've learned to do is adapt. So because at one point I was able to do all these kind of things very quickly, and also picking out clothes because at various points... I have MS, that will give you an idea as to why sometimes I can see normally for example and at other times I cannot. For example, whilst I'm not colourblind, I have colour perception problems where especially black and blue will look the same, black and green can also look the same, red can look like brown. These are very interesting... challenges. Especially because, I work in fashion as well. So not just for dressing me, but for dressing other people.

TA: Do you have two wardrobes: good days and relapse days? Is there an overlap? Do you prepare?

MD: (laughs) This is "Great Marlo day" wardrobe. No, no I don't. There are ways to get around it. For example, if I'm in a relapse or having real difficulty seeing the difference between colours, I will put a safety pin in things. For example, when you're washing socks and when they dry you're thinking "OK, which matches which?!". You can either be the rebel and wear unmatched socks or you can put safety pins in all your blue ones or put the same pin in the same pair. Also, I have a few pairs of skinny jeans but part of my disability is that I get so exhausted that I have to sit down to try and get my jeans off so if I'm having a day like that I know "Do not reach for those skinny jeans because you'll be so sorry later. It'll seriously take you twenty minutes to take them off."

TA: This is kind of what I meant about my interactions with clothes. I might look like there's not an issue but if you were seeing me get dressed, or even to the extent of leaving a restaurant and grabbing a jacket off an attendent...

TA: And they don't know how to react. They look at you and they're thinking "Most people put both arms in and they're fine..." and they're thinking... and what usually happens is people get paralysed with fear and they don't help

TA: It's not their fault, people just haven't had the training or the personal experience to degree at an intimate level that family members do - of dressing people. Talking of which... you were dressing people before you developed MS. Did that help you with those thought processes, that you were dressing other people before that, in a manner of speaking (laughs)?

MD: I think so. In some ways it helped, in some ways it hindered perhaps because I felt a little lack of confidence when it first started happening. I was so used to working so fast and you know picking out a jacket and saying "Look at this fabulous blue jacket. I think it would go so well with your blue trousers" and now I'm saying ""Look at this fabulous... let me just look at the label... oh hold on." And that's what I'd have to do, I'd very quickly look at labels and see what the colour was. So, at first I thought "This is really, really bad. How am I going to survive this one?" but then I got my confidence and used the skills I always had and just tried to adapt them to the new situation.

TA: I think slowing down is a technique that people with reduced abilities in whatever area have to use. I noticed this about myself because my mobility has noticeably decreased. Slowing down makes things a heck of a lot easier.

TA: Actually, as long as you're on top of what you're doing, the person who you're interacting with won't realise you're doing it slower. They'll just see you doing it properly.

TA: Whereas if you try and do something quickly, you might not necessarily do it particularly well. I think that's definitely a lesson that everyone who acquires a condition needs to adjust to. You may not do something at the same speed but you've generally not forgotten the skillset. You just have to adjust the speed

MD: That's a great point, I think people get frustrated if they're slowing down and they think it's perhaps letting something defeat you or you're not as good as you used to be or something like that. But you're absolutely right, you do need to slow down because people are looking to see if you do it right. Not if you're doing it fast. You set the pace.

TA: I wonder if any process not developed specifically for disabled people, like tailoring for clothes, actually would have benefited me as a disabled person more than it probably benefits the general public, who could quite happily do their own suit if given enough time.

TA: The problem is that most of the adaptive processes are at the expensive end of the market.

TA: The other thing thing that occured to me was ... I have lots of Velcro trainers.

TA: Velcro is weird because it is either really expensive because it's really rare or its expensive because it's fashionable! At the moment it's probably somewhere in the middle. It's almost become a commodity.

If you look in the right places you can get it in most things. It is a very useful tool. (laughs)

MD: Velcro is such a great invention because : There's two ways of going about it. 1) I work in high end fashion so it's quite easy because it's one on one service. We're so attentive to our clients. Getting things tailored is 'the usual' so that is something that we'll do pretty much for free. Obviously the clothes are very, very expensive so you're paying there and paying for the service but if someone wanted to put Velcro instead of a zipper or button, we'd have it the next day for them. But 2) For someone shopping on a regular high street, if you're buying a jacket for instance it's then up to the individual to find a tailor or find someone to put the Velcro in.

TA: Is the marketing of clothing adjusting to the increasing number of disabled people (as people age, they become disabled, it is the nature of humanity) and bringing some of those high-end attitudes onto the high street? You don't sound convinced that you could go to a high street store and say "I love this dress but could you put in Velcro rather than a zipper please" and they wouldn't say "That'll be £3500 please".

MD: That is the question, because I am not convinced that they would do it themselves. I think some high street stores would do it but probably quite a lot of people have not been faced with this kind of question. So they might look at you blankly or they may say "Oh, yeah, of course". It just kind of depends on the person and what their experience is. But if they can't do it in the actual store, then it's up to you to find someone. There's loads of tailors who'd do it for cheap - they're not even expensive - retired tailors... all kinds of people do these things.

MD: And once they do it once, that can be your person you take it to... buy your clothes, give them a little pile and just say "Velcro-ize".

TA: I believe people will help if they think I will struggle without the help. There is an added dimension for some people - if not me - that remaining stylish is an aim and thus failing to do so affects your life outlook.

MD: Sure, if you take a jacket for example: Take the buttons on one side, move them to the other side - facing out, and put the velcro underneath.

TA: You described yourself as a "Girl with pretty things". That must play back in your head when you're thinking about your body image, particularly when you're not well.

TA: Are there any easy methods to stop those thoughts? The problem I guess is that the nicest thing in your wardrobe is probably the least accessible thing.

TA: Despite not feeling very steady on your feet. I have to say I know someone who has hypochrondroplasia, stands at normal height in heels and so unless you interrogate her shoes you wouldn't know she wasn't normal height.

TA: Therefore in that scenario they are very empowering pieces of clothing because they allow her to be invisible or normal or less noticeable, if she wants to be. I went the other way. My walking stick is heavily covered in stickers. I'm very visible when I choose to be.

Heels are one of those things that somebody told you off for wearing, multiple times since developing MS.

TA: "How can you do that? Surely you're gonna fall over!" And actually, that's a personal choice thing. A bit like saying "Don't smoke, you know it's gonna give you cancer."

TA: It's a risk/reward thing and if you can control your own body then to an extent, the risks are up to you. Maybe part of it is that people are so used to people with perfect balance and poise wearing those clothes (and that's the marketing thing again), that to see someone who isn't challenges that dynamic and makes people think "Oh, they must be falling over because they don't look like they are perfectly poised"

MD: That's true. It's multi-layered. Clothes are modelled, esp. women's clothes, by very thin women and so many young girls grow up wanting to be that perceived perfect physique. Then you find people against that and then you find all the people in between, which is fine. With disabilities it's another layer added to it, so there's all these things like: are you represented in magazines? Do you care what's in the magazines? I think, everyone in general wants to look their best, wants to feel their best. Even people who say they don't care about fashion or they have no fashion sense or whatever it is (laughs)

MD: They still have a style. If you think you have no style, then no style is your style.

TA: That's true. A good friend of mine has dyspraxia and it's part of his style that he wears loose clothing. It is part of the necessity of his condition but it's part of his identity as well, to the outside world.

TA: I guess that's the strategy, you've gotta learn to own these things. And if you always like pretty clothes then you'll find ways round it and as we've discovered, Velcro is clearly the way to go and tailoring. If you don't like pretty clothes then you don't and you'll always be like that. I've never been engaged with the choice. A better phrase than 'lacking in style'. If it looks ok, I wear it.

MD: Thank you again Marlo Donato, for coming in to chat and for lending us the benefit of her years of experience in the fashion industry. I think we explored the contrasts between high street and high end fashion.

Next week is the start of Disability History Month. So to those of us who are disabled, do something historic. And look back at those who have done before. I will leave you with Water Colour by Baluji Shrivastav who is both a friend of this radio station and someone I engineered for in the past myself on London Diaspora Live.

For the Technical Difficulties crew, I'm Tim Abbott. Wear your scars with pride and remember, we all have Technical Difficulties. Goodbye.

Week 9 was hosted by Tim Bonham-Carter, exploring the Technical Difficulties of deafness.

Welcome to Technical Difficulties, this is Timothy Bonham-Carter and I'd like to introduce myself, what I do and why I'm on the show today. I work as an interpreter and also outside of this I sit on the committee of Walthamstow Deaf Club. I'm also very much an advocate for deaf individuals as I very much understand the issues they face every day, in all sorts of situations from the stigma attached to being deaf to how they face an ever increasing battle to get on in life. That brings me to my next point about the new coalition government and the deep cuts they are proposing, especially where services are concerned. A lot of services are already beginning to feel the noose being tightened on their budgets and being ordered to resize their operations or merge them in with other services. For example, there is a service that I used to access as a youngster which is now subject to these cuts. To read from a related petition: The Sensory Impairment Service in central Bedfordshire is at serious risk of being cut. This could include removing preventative work for pre-school children and a considerably reduced level of service for school aged children. Early year support is fundamental to deaf children to allow them to develop alongside their hearing peers.

Honestly, speaking from my perspective, I accessed this service as a youngster and I got a lot of help with my speech - otherwise I wouldn't be here today on this radio show, presenting. If it wasn't for those individuals, who gave me a lot of 1 to 1 support, I wouldn't be here speaking to you today because I have a severe hearing loss of 60-70% in each ear. I have a great command of the English language and it's down to these individuals who have helped me to be who I am today. They've given me the skills to progress in life and also to become a BSL interpreter.

What I want to say to you is: It really comes down to the beginning of your life and the education you receive. As the petition says, deafness is not a learning disability but government figures included in the National Deaf Children's Society's "Hands Up for Help" report show that deaf children in Eastern England are 40% less likely to achieve A-C grades at GCSE in English and Maths. We all know that English and Maths are really important for any kind of learning or any kind of knowledge we want to glean. We understand that it is government policy to close this gap but without the current level of support, this won't happen. It's a really worrying situation for deaf individuals and the parents of deaf children. It's something we really need to be acutely aware of.

This Summer saw the closure of a deaf school which had been open for 60 years after class sizes grew to 27 pupils and the government decided it couldn't stay open.The school had done a fantastic job over 60 years but now the pupils were sent to mainstream schools.

Mainstream schooling is really not the answer and the government really needs to change its approach to educating children, or anyone who is deaf. A lot of individuals I work with on a day-to-day basis have a very low level of literacy and numeracy and therefore they have lots of problems in any area of life from communication to getting a job to filling in a job application, so this is really going to impact on a lot of people. I can't emphasise enough, it is vital that people receive a good solid education but some of those providing the service are not deaf-aware and are therefore hindering the education. At the moment there are a vast number of deaf people out of work and on benefits and the government needs to reassess its strategy. We need to stop just giving people benefits and look at giving them an education and helping them better their lives. They can go out there, they can be somebody and they can move forward with their lives. At the moment, a lot of deaf people take a back seat and say "What's the point getting a job if I get these benefits. The money I would earn will be marginal compared to the money from benefits".

The Government really needs to look at how it can make the situation better for deaf people generally.

The Times newspaper reports that £9bn a year could be slashed from the benefit budget by merging a series of benefits such as Incapacity Benefit and Housing Benefit into a single benefit, a large chunk of which has already been promised to Iain Duncan Smith to finance the charges. The Treasury had already previously announced plans to cut £2bn by introducing a means test to IB and demanded an extra £2.5bn is cut from the Employment and Support Allowance which has replaced IB and will eventually takeover for existing IB recipients. The introduction of ESA has been a problem for the deaf community because many deaf people can pass means-tests because they have no mobility issues. However, they have communication problems. The government really needs to look at how to change that.

The Royal National Institute for Deaf People released a report in May 2000 saying that a hearing impaired individual in the UK is more than twice as likely to become unemployed as a person with normal hearing. Data showed that 15% of hard of hearing people are unemployed, compared to 6% of the hearing population. In the 25-45 age bracket, 22% of HoH people are unemployed - more than four times the rate amongst people with normal hearing in that age group.

We need to have another survey, this data is over 10 years old and we need to find out what's going on out there because from my day to day work with deaf people in Jobcentres, I can see there's a lot of deaf people out of work so we really need to look at targeting that group to get them back into work.

In the earlier survey, 77% of respondents said being deaf had prevented them getting a job. I've had first hand experience of this. If you state on a job application that you have a disability then the company is bound to give you an interview under the terms of the Disability Discrimination Act.

Deaf people are very visual and can read body language well because they have learned to compensate for hearing loss by increased visual awareness. So at mandatory interviews I've had I can clearly tell at the very start that they don't want to give me the job but they have to interview me because of rules and regulations (or red tape, if you like).

This is what we face every day as deaf people. We need to change the preconceptions that people have about deaf people and really we need to have some kind of training to make employers aware of how to deal with deaf people and we need to have deaf awareness within the workplace and within society at large because a lot of society doesn't know about deaf people. I've met hearing people who've never met a deaf person in their lives before and they quite clearly don't know how to deal with that situation. They're frightened of how to deal with a deaf person because it's a frightening situation. We need to make that understood. The RNID survey said that 68% found that looking for work was a problem because their communication needs were not understood. Employers need to be aware of Access To Work - a government funded initiative to ensure that people have the tools available to do the job, like communication support (whether it be a typist, sign language interpretor, note taker, Minicom or computers) to allow them to communicate with their colleagues. Access to Work has been a success over 5 to 10 years and a lot of deaf people are benefiting from that. A major hurdle that many deaf people have is trying to get the job in the first place, so we need to overcome that - it's something the government also needs to look at. The RNID survey said that with increasing unemployment, HoH people are twice as likely to be unemployed as they were four years previous, despite the DDA being passed in that time. The survey asked 10,000 deaf and hard of hearing people who use the TypeTalk telephone relay service.

TypeTalk is not really suitable for BSL users because that language has its own linguistics and therefore English is not their first language and BSL's visual emphasis means that the interpreter at the other end may not fully understand what the deaf person wants. So the service doesn't really work for the 70,000 BSL users in the UK. An added problem is that there are only 500 fully qualified BSL interpreters in the country. France has 400,000 deaf people and 250-300 interpreters. There are not enough. In France they have the quality but not the quantity.

In the UK, as well as interpreters we have communication support workers - but quite a lot of CSWs aren't good at communicating properly because they have no awareness of deaf culture and issues. 20 years ago, a lot of interpreters were CODAs (Children of Deaf Adults) who interpreted through life experience whereas many people now are interpreting English verbatim. This is not the service level BSL users expect. Deaf people have to put up with the service they get. This bad service often causes misinformation and it dis-empowers deaf people because they would rather say nothing in case it made the situation worse, closing themselves off from the situation. This is quite detrimental to them, even if they don't realise it's having an impact. The Government only recognised BSL in 2003 and it needs to wake up to the impact.

There has been a dramatic rise in the use of cochlea implants for children as young as 3,4 or 5 because the government sees it as a way to avoid long-term use of (quite frankly very expensive) interpreters. The Government thinks that by spending £40,000 on one operation, they will save money in the long run. Well, I don't think they are going to save money in the long run because when you see a child with a CI - they're using BSL not spoken language so the government will still have to pay for an interpreter in the long run. Does this really solve the problem? That is a question I pose to the government. People need to get involved, and ask questions of local MPs.

To change to something lighter, my hobby is music production and DJ'ing and I am working to bring Sencity to the UK. Sencity is a multi-sensory event which has been running since 2003. It homes in on all the senses of a deaf person and is designed to be inclusive. We want deaf people to meet hearing people and communicate freely on the night of the event. It was founded in the Netherlands. They wanted to integrate deaf people into a music event and have since had nights in Brasil, Jamaica and most countries in Europe. Now we're going to have the first one in London in 2011 and I'm an integral part of that group.

We want to reiterate that music is accessible to deaf people. They can't hear but they can feel the vibrations and the bass. They have just as much of a good time as a hearing person does. Deaf people have a social life like others, going to pubs, clubs, theatres, art events, night clubs. We're all human beings at the end of the day. We can enjoy music just as much as anyone else, and I also produce despite being deaf. It's great having that outlet through music. Music is great because everybody needs it to escape and it helps deaf people escape. We all need to have a form of escape. We can work all day long but we need to have some form of escape to make us relax. Deaf people use music as much as hearing people would as a relaxation tool but they have to go to a nightclub to experience it as deeply as a hearing person may at home.

DJ: Hello, my name's David Jennings and I'm a singer-songwriter. I've just been signed to 371records.com. I'm also working with Mind on a mental health music festival on the 23rd of July next year. 50p of the proceeds from my new single will also go to fund the festival. The event will be people with mental health problems and various disabilities performing live and selling their art on stalls to encourage entrepreneurial engagement. We are aiming to show people with mental health problems don't have two or three heads. I'm aiming to curate and expand it. Please drop me a line.

DJ: About 20 years, with various groups of disabled people. I've performed at events such as the Basingstoke Festival and various festivals around London.

TBC: So, do you see yourself as a role model for other mental health and disability musicians?

DJ: Well, most artists have mental health problems. including some of the most successful musicians in the country at the moment and a number of classical artists in the past.

DJ: Sure, this was produced by up and coming film producer Cliff Bradley - who won a joint-prize at Cannes. Richard Clarke is the guitarist.

Thank you very much David. I'm Timothy Bonham-Carter for the Technical Difficulties crew. Wear your scars with pride and remember, we all have technical difficulties ahead. Goodbye.

Music: Stevie Wonder - Sir Duke.
TA: Um, that was an oddly abrupt ending to that. This is Technical Difficulties on Resonance 104.4fm and the person screwing up the CD is me, Tim Abbott.
Tweet us @timothyabbott. Here with our guest Marlo Donato today, discussing the relationship between musicians and music and disability, in a bit more detail than we’d managed up until now. Marlo, welcome to Resonance one-oh-four point four f m.
MD: Thank you. I’m very happy to be here, thanks for having me.
TA: Technical difficulties are the nature of disability and society. How does that alter when you are a musician as well?
MD: I think when you are a musician with a disability it’s amplified, to be honest with you. I think there’s many barriers that disabled musicians face, as anyone with a disability does, whether it’s just social issues or literally access issues. A lot of us have gone to a rock concert or to see live music and realised there’s no access to a toilet. There’s so many issues that come up but when you’re a musician with a disability there’s all kind of issues that come up actually involving your performance, or perhaps just the way you feel about performing. If you have a disability and can make you feel like maybe you shouldn’t be a musician. Maybe you shouldn’t play an instrument. Or even try to play an instrument.
TA: So you think that it makes people want to be invisible?
MD: I think it can, and I think more often than not it does. I think it’s really unfortunate, and it’s part of what I’m passionate about is making people see it doesn’t have to be the case.
TA: To illustrate it with your own experience: You developed a disability.
MD: Yes
TA: How did that impact on your life as a musician?
MD: When it first started happening, because I started losing eyesight, it made me start to lose confidence, to be quite honest with you. I remember the first times I was on stage and started to realise I was losing vision and you know I was playing on stage and would look over to my guitarist and things would not quite look right, the way they used to, I wouldn’t see what I used to and it was kind of difficult. You know, can I continue to do this?
Also for me, part of my disability is that I don’t know where I am in space, so I become very awkward in this way. When I close my eyes, which is something I love to do when I’m singing, what would start happening is that when I open my eyes suddenly I realise “why can’t people hear me” because I’m not in front of the microphone any more. So that was something that was really worrying. “If I go on stage tonight, am I literally going to fall off?!” That was something that scared me, to be honest.
TA: So, it’s a process of adjustment if that artistic skill pre-exists that condition?
MD: Yes.
TA: Does it change depending on the instrument you’re playing?
MD: I think so, for me the singing part was probably the easiest part to adjust to. One of the things that happens with my condition is that my voice can crack, but for pop or rock music that’s fine. It’s cool actually (laugh). But when I’m playing keyboard, my left hand will go numb or it will shake slightly trying to play left-hand notes. So what I’ve learned to do is adapt the left hand so instead of playing maybe three notes at once I may only play one.
TA: This flexibility has led you to lead a masterclass for Drake Music.
MD: They are a charity, and they are partly funded by Artsline. Drake Music try to remove barriers for disabled musicians. They work with people to achieve their own potential. It’s not just music therapy, although that is part of it. They work with schools and institutions to work with people to involve music in their life, whether they are professional musicians or amateurs and whatever level. What they mainly do is provide a bridge for people to create music, that’s the bottom line.
TA: Tell us about your Drake Music Masterclass.
MD: There will be three masterclasses throughout the day and you can either observe or actively participate. I will perform, and then I will talk about performing and artists with disabilities and then you have the opportunity to come up and play your own music in a non-judgemental setting and we’ll talk about ways we can adjust - whatever your level of ability is. Some people will just be observing and people are welcome to that as well.
I like to focus on your level of ABILITY. A lot of people focus on what we can’t do but a lot of the answers - especially when you’re a musician - is to focus on what you can’t do because there’s usually more you can do than you necessarily think.
TA: Well, and yes fundamentally if you focus on what you can’t do - nothing will come out of the instrument.
MD: Right, nothing will happen. (laughs)
TA: Where do people look for information on that?
MD: http://www.drakemusicproject.org/newsdetail.asp?nstoryid=161

TA: These are the open airwaves. Resonance 104.4fm. Technical Difficulties. Tim Abbott and Marlo Donato. I think it makes sense to have a short pause. If I can get it up, we’ll have a short pause in the company of Miss Donato over there, so just bare with me while I try to set that up. This is Resonance 104.4fm, we are the art of listening.

AND... the website is up. So Marlo, what do you want us to play?
MD: There’s one on there called Stranger. This one I wrote about feeling like a stranger because of disabilities.

TA: This is Resonance 104.4fm. Technical Difficulties with Tim Abbott and my guest Marlo Donato. And you said, that was specifically about the experience of becoming disabled.
MD: Yes.
TA: Since that track came off the myspace page, we were discussing how much easier it was to publish and share music - art in general but you can disengage with music and do other stuff at the same time - in this age of social media whicvh you all know the names of so I won’t bother promoting them.
MD: No, you don’t need to.
TA: You have a Myspace page, you have a Youtube page. Were those your primary port of publication or were those things already published before you posted them up?
MD: I did have a CD published before but things started picking up - strangely, some might say - when I started getting disabilities. I did happen to meet people and do shows that were benefit shows and charity shows but the way I’ve embraced my music is this: There’s so much mainstream, there are just so many people doing the same thing. So much vanilla.
TA: I think everyone’s experience is unique and they will have something to bring to the party but if you switch off and you see a bunch of people looking the same and acting exactly the same you may not engage with their story as much as if that person was visibly different - or audibly different since as you were saying before that your condition changes the dynamic of your voice as well. Although it’s beneficial as a marker it’s not something any of us voluntarily go towards. But it’s useful for it to have a plus side.
MD: It is, and when you are on these kind of social media sites it is a way of showing mainstream people what you are about. I know personally before I had this I never used to think much about disabilities and access I just kind of lived in my own little bubble. So this is your chance to shine, to have a page that shows the way you are - and it’s probably different and that’s great because who wants to see the same thing over and over?
TA: I’ve noticed since this programme has rolled on just how more visible the disability rights movement is on social media, and particularly Twitter, than it is on radio and TV (I don’t like the term ‘mainstream media because Resonance FM is an Ofcom licenced radio station). The visibility of disabled people on those sites is a defining characteristic. And you also get an increased level of shared information - which is vital to people since improvisation is a natural facet of disabled life.
MD: Right.
TA: The shared information also comes about because different people do things differently and compare for the most effective way of doing something. That kind of sharing is virtually impossible in the one way street of radio and TV whereas social media are 2 way streets. For good or ill.
MD: Right
TA: It is proven by the presence of me, Marlo and Drake Music on Twitter - doing a similar thing in different ways but having linked up. And also fundamental to it is: If you are incapable of getting out of your house then a system which doesn’t require you to leave your house is obviously beneficial to one which requires travel.
It certainly helped me as a kid. That’s why I’m so engaged with social media because I’ve been doing it for so long due to that part of the dynamic. (laugh)

Time is running away. Thank you for coming in, Marlo Donato.
MD: Thank you for having me.
(Editor note: Marlo’s book is Awkward Bitch, a title we could not broadcast)
TA: Thank you to Drake Music for sorting it out. I’m Tim Abbott for the Technical Difficulties crew: Wear you scars with pride and remember, we all have technical difficulties. Goodbye.

We took a break in the week of October 15-17, as our hosts at Resonance based themselves at the Frieze Art Fair in London's Regent's Park... live radio every day and even live video. My thanks to all my guests and contributors in the first 5 weeks.

Show 5 looked at pain, in the company of Elaine Axten and Sarah Wylder Deshpande. Details of the work done by the Mental Health Foundation into pain at Be Mindful.

Music: Don’t Cry - Deerhunter

This is Technical Difficulties, Resonance 104.4fm. On this week’s show we are looking at chronic pain. Is it invisible to the disabling society here in the UK and is the situation any different in the US. On the line with me is Elaine Axten.

Elaine is in the self-same city as us here at Resonance FM but due to the technical difficulties of dealing with pain in life, couldn’t make it into the studio.

EA: No, I don’t really make it many places. I often think about moving out of London simply because I don’t use it. It’s good for people who work and have a social life and I don’t have either of those things. So, I’m kind of hiding, hiding in the city.

TA: So, what causes your pain?

EA: I have had a variety of different diagnoses, probably the most useful one was fybromyalgia. I had been getting lots of little things wrong with me, but not seeing them as being connected. So, I would have some cystitis, I’d have some migranes, I’ve had some insomnia. I was just seeing these things as separate things. And then they all came together in a grand orchestra.

What really put me on my back was back pain but my first diagnosis was a psych diagnosis. I think it’s not that uncommon for women to be seen as malingering ladies who moan. That’s what took me out of the workplace.

T: They assumed that because something was wrong and they couldn’t identify it, that it must be psychological.

E: Yeah. Really they didn’t make any kind of effort to identify it. It took years for me to get a diagnosis and it was really from pushing - me and someone on my behalf - that I got to see a specialist. You have to see a rheumatologist for fybriomyalgia - it used to be called muscular arthritis - but they don’t own it. So they guy kind of prodded me about a bit and said “Of course you have fybromyalgia” but of course they’re much more interested in what kind of state your spine is in so they sent me off for an x-ray. It was a kind of diagnosis on the way to him finding out what he wanted to know. Recently, I had another diagnosis which makes a lot of sense given what I’ve been through - which is endometriosis. And again, I’ve probably had it for years.

It would have been better to have these diagnoses first, instead of being told I was mental. and being put on drugs which actually made me mental. Which wasn’t actually fun.

T: No, I can imagine not. So... given all that... Do you cope? If you do, how do you cope, how well do you cope?

E: I was a teacher and I thought, I’ll give that up and do a PhD and rejoin teaching at the point I would have been if I’d carried on teaching. So I signed up for a PhD and I was absolutely driven into the ground within a few weeks. I became very ill. I was already ill and I got worse.

So I thought, let me go back to my basic training - which is fine arts - I’ll have an exhibition. And at the time I was on drugs which made me even more fatigued that I was normally. I found it horrible, I actually disliked having my exhibition to the point where I took an overdose of the drug which was making me even more tired than usual.

I didn’t die - which you have no doubt realised since I’m not talking to you from beyond the grave. What happened was I thought “Now, I really will take myself on.” and I joined a course which I paid for (which was quite frightening because it was expensive for me on benefits) called Breathworks - it’s mindfulness based for coping with pain and illness - and I’ve actually ended up volunteering for that course, I’ve done it 10 times and I’ve done the training to be a teacher even though I’ll probably never run a course myself but it really helps.

Even though I’ve been through the course 10 times I’m still learning because every day you’re peeling back another bit of the denial you’re in, having to deal with new stuff that arises - losing your career, not being able to have a relationship. You name it, there’s lots of aspects of life that you continue to have to deal with as life goes on.

TA: Disabilities can be visible to a varying degree. How visible is your pain? How is that visibility or lack thereof affect how people react to you?

EA: Well, the people I’ve stayed friends with are the ones who actually say (laugh) “You look awful” because they actually check to see how I am. Whereas because I’m clearly able bodied and have the build of a Viking (I look quite hearty) and I rally in company so I seem well... and what happens is after a couple of hours of having a visitor I need to lie down for two days. But they don’t see that - only people who see me on an ongoing basis, eventually, do realise.

It’s not visible. I’ve often wished I have stigmata because I like the idea of having some kind of symbolic bleeding but even something visible would be nice, just as a sign because actually I used to get nosebleeds as a kid and I used to get so much sympathy and they don’t hurt. Whereas now it hurts and I get no sympathy whatsoever.

TA: I can relate to that. As I child I used to fall over a lot but it wouldn’t hurt me. but the reaction would be sympathy at least - somewhere down the road towards empathy but I wonder if we need a society that can actually react to people when they’re struggling rather than waiting for some big neon sign above their head that tells everyone they’re a cripple....

EA: I think we are in a bad society for that to happen, in an industrialised, segmented society where people are isolated. Everything is hidden, so many taboos. Take death for example. Lots of suffering is very hidden. In another society you may be dead. Or you may be working to your abilities within your family group. If you couldn’t manage anything you’d be lying down and people would take care of you, witness you. Like many people in a large city I live alone and you go ignored because there’s no reason for people to notice you. You’re not a particular drain on resources despite what the government would have you believe, and you’re not getting in anyone’s way. You’re literally invisible unless you make a song a dance about it. But if you’re not well, you’re not in a great position to make a song a dance about things.

TA: I can absolutely understand that. In fact, we were discussing before the disabling nature of filling out the paperwork for disability benefit.

EA: I’ve stopped trying. People tell me about things which could alleviate some of my financial strain and I’d actually rather go without because you talk yourself into being even iller and then you are left to handle it alone. You make yourself more ill by trying to imagine your worse case scenario in every aspect - and it’s a very detailed form. It’s even more worrying for people who suffer with anxiety and depression. But it’s not just this government. A couple of years ago there was an announcement that Incapacity Benefit was gonna be rebranded and we were all going to be packed off to work in jam factories. I was absolutely terrified.

TA: Yeah, they’ve actually followed through on that. It’s the Employment and Support Allowance. They’ve moved it from the ballpark of ‘how can we care?’ to ‘How many people can we activate as drones in the economy?’.

EA: Well, at that point it becomes an argument of statistics. I believe that the reason so many people were on IB originally was because during the Thatcher government they didn’t want so many people on the dole so when they closed the pits and stuff they put a lot of people on Incapacity who perhaps shouldn’t have been on. That was a good way of hiding people. Now Incapacity is the target because we don’t have so much of a big employment problem - although it looks like we’re about to have. It’s swings and roundabouts. What category are we going to fit in now. I mean after spending all Christmas listening to Radio 4, the same news every hour, I was having a real problem with anxiety. By the end of Christmas I was convinced I was going to a labour camp, pretty much. I was only really lucky thatI was onbe of the first people being interviewed and the woman was shocked that I wasn’t getting more benefit. And I said “You’ll be surprised, I won’t be the only one.”

TA: Yeah, absolutely. Elaine, I have to leave you there.

EA: Lovely to talk to you.

TA: Take care of yourself.

EA: And you.

TA: This is Resonance one-oh-four point four f-m. The open airwaves. Technical Difficulties with Tim Abbott. A short break for Daddy Antogna while I grab my next guest from the United States of America. This is Resonance one-oh-four point four f-m.

Music: Daddy Antogna

TA: This is Resonance. one-oh-four point four f-m in Central London and around the world at resonance f m dot com. Technical Difficulties with me, Tim Abbott. And now, live and direct from the state of Virginia in the USA - I have Sarah Wylder Deshpande.

Unfortunately, you’re joining us today because you have recent experience of a quite dramatic decline into pain.

SWD: Yes, about 10 and a half months ago, I ruptured a disc in my lumbar spine. And since then, I’ve been dealing with chronic pain from that.

TA: So, how do you cope with it? Do you cope with it? My last guest was saying in most circumstances she doesn’t.

SWD: It really depends on the day and how severe the pain. I have a series of physiotherapy exercises I do when the pain is mild or moderate and that often helps. I also have pain medication. Strangely enough one of the things that helps the most is the dog I got recently. He will lay around with me when I can’t do anything and sometimes he helps me get outside when otherwise I wouldn’t be able to move.

TA: I think relying on animals is a fairly common coping device. I wonder if that is a depressing reflection on society that we have to. It doesn’t seem uncommon for disabled people to be relying on their pets for emotional support.

SWD: Well, I think it is very stressful on family and friends to be around someone with chronic pain because first of all you might not notice the extreme change in your mood when all you can think about is how much pain you’re in and how you can get that pain to stop. You might not realise how cranky you are. That can really take a toll on your relationships. But the dog doesn’t care (laugh).

TA: Let’s look at broader society there in Virginia. Are you aware of people being alert to the amount of pain you’re in and the suffering it’s causing you?

SWD: Sometimes. It kind of depends on how vocal I’m willing to be about it. I mean, I could be at a party and I’ll have to say “I have to go into the other room and lie down. There’s nothing else I can do. I have to go into the other room and lie down and take Vicodin. That’s all I can do.”

But often people are quite dismissive of it. Like “Oh, a lot of people have back pain. It’s no big deal.” and if they haven’t experienced themselves they don’t quite know how severe it is. So... people can be dismissive of it and it can be a little frustrating definitely.

TA: You were telling me about a particular experience of public transport.

SWD: Yes. Because I don’t have anything like a cane or a back brace (I can use that for my condition), there’s nothing external that shows I’m in pain apart from maybe my posture or the look on my face. One day I was on the DC Metro here and when I sat down I was in such severe pain that every bump was getting to me, every time the train jolted. I realised I was crying. Right there in public. I was so embarrassed.

TA: Yep. Been there as well.

SWD: You’ve been there? <breath> It’s just the most embarrassing thing. People look at you: Are you crazy. Should I move away from you. What’s going on?

You feel like people are staring at you and you’re just angry. First of all frustrated that you’re in so much pain and second of all that you’re being stared at, definitely.

TA: So I wonder Sarah, are that point are you angry at the people who are staring? Are you angry that society is in a state where people would stare at you or are you angry at yourself because you’re the person creating that situation by being on the Metro.

SWD: It’s a bit of both. It’s a bit of “OK, I need to get hold of myself. I need to be able to put up that front of being tough and in control of myself and able to be stronger than pain” which is definitely something in the US. You want to be tough, you want to be strong and you feel ashamed of yourself that you are letting it get to you that much. But you’re also angry that people are rude enough to stare and worried what they might be thinking about you.

TA: The UK system is state driven, what did you do?

SWD: I’m very lucky that I’m covered by my husband’s health insurance plan right now so what I had to do was go and see a GP and then be referred to a specialist that my health insurance covered but unfortunately that specialist’s first suggestion was to do surgery. We chose to get a second opinion. But unfortunately, the second guy who takes a more conservative approach and has not recommended surgery is not covered by health insurance. So that’s been several thousand dollars.

TA: Ouch. Sorry to hear that. Thanks for joining me Sarah. It’s been a while. I think you could move fairy freely last time we met up, that’s the biggest irony of the whole deal. Good luck on the recovery. You have a good day.

This is Resonance 104.4fm. Technical Difficulties. Further details, transcripts and a chance to listen again at light chronicles dot info. For the Technical Difficulties crew, I’m Tim Abbott. Wear your scars with pride and remember, we all have technical difficulties. Goodbye.

Music: Sir Duke - Stevie Wonder

Show 4 was another music showcase

<Superstitious - Stevie Wonder>

Hello. Good afternoon. This is Technical Difficulties. Equalising the Airwaves.
I’m Tim Abbott and that was Stevie Wonder - United Nations Messenger for Peace. He stood in front of the UN’s intellectual property board (link) this week and released his declaration of freedom for people with disabilities.
“We must declare a state of emergency and end the information depravation that continues to keep the visually impaired in the dark. We must spread the word that the untapped genius of the 300 plus million who have a visual disability are in need of our love and action today. Not tomorrow, today.” he insisted. He added ““While I know that it is critical not to act to the detriment of the authors who labour to create the great works that enlighten and nourish our minds, hearts and souls, we must develop a protocol that allows the easy import and export of copyright materials so that people with print disabilities can join the mainstream of the literate world,”

He finished by urging consensus on the many proposals on the table that will create a safe clearing house for the exchange and translation of books for the accessibility of people with visual impairments.

This month began with a survey of just over 2000 people by Scope from ComRes. Data was weighted to representative of the demographics of the country and in that demographically balanced group, nearly 40% of the non-disabled people surveyed who do not have a disabled family member did not know any disabled people. 90% of non-disabled people surveyed say they had never had a disabled person to their house for a social occasion. And only 21% had had a chance to work with a disabled colleague.

Whether there are disabled people in these lives who have no identified themselves as such, or are not identifiably obvious as such, was not made clear. After all, many disabilities are not apparent to those without them.

The charity also highlighted a report by the Institute of Fiscal Studies earlier this year which argued that 20% of recipients of Disability Living Allowance might lose their entitlement to that benefit as part of the system reform.

Congratulations to the Government on that particular statistic.

In other news, this month is Hydrocephalus awareness month. I would have told you earlier but I myself was not aware.

Hydrocephalus is a condition that has been in the background of my life since I was diagnosed at age 2. In common with many who have the condition, I have a plastic tube draining excess fluid running from my skull into my gut. Like most embedded objects, it can become dislodged or infected and clearly that’s not a particularly healthy state to be in.
It is up to those of us who carry this condition to be aware of the risks and symptoms of the tube failing, so if you have hydrocephalus and don’t know the warning signs check out this page (link: asbah.org.uk)
Those of you lucky enough not to have this condition, the same site offers information on the condition and details on how to fundraise for its treatment.
Let’s have another musicial interlude, this is Station Siebzehn with the suitably thematic “Without rain, there would be no rainbow”

<Ohne Regen, kein Regenbogen - Station 17>

That was Station 17 from their new album Golden Variations with their fellow Hamburgers Fettes Brot, North German hip-hop - quite an unusual combination...

These are the open airwaves, you’re listening to Technical Difficulties with Tim Abbott

Back on the news round-up, the Office for Standards in Education within the UK government has argued that up to a quarter of pupils within the Special Educational Needs systems should not be in those systems. 54% of those within the systems are those deemed able to integrate into regular schooling - they are assessed for assistance by their schools whilst only 2.7% are deemed to be worthy of entering the Statementing system and by most benchmarks considered to be a disabled pupil.

I wasn’t statemented myself but I did go through a weighing up process, after which I headed into that 54%.

What strikes me about these statistics is that they are basing these things entirely on someone else’s labelling - and someone did make this point in the Guardian newspaper earlier on in the week. Interestingly, the teaching unions didn’t object to the statistics: they objected to the implication that too many pupils are being classified SEN, rather than “the reason these figures are too high is because the system itself is disabling these pupils”. Certainly, the NUT came out forcefully against the suggestion that its members were not doing a sufficiently inclusive job.

In other news that caught my eye, and since we began this series talking about the use and suitability of language - and in fact I had a conversation on this topic in the build-up to this programme - was that in the past year both the Chief of Staff for the President of the United States and the actress Jennifer Aniston have both used the word “Retard” to describe a negative set of circumstances.

Rahm Emmanuel described plans as being “retarded” - a bit like describing a transport network as being ‘crippled’ by strikes I find this label completely illogical since networks and plans cannot have human traits - and stigmatising. In my experience, this use of the word is much more common in the US than the UK and more frequently the result of a lack of respect rather than a deliberate intent to insult people with intellectual disabilities. Although, his outburst came at a curious time when his colleagues in the Senate are passing a revision to US statute to strike the word “mental retardation” from law and replace it with the internationally adopted Intellectual Disability.

And Jennifer Aniston... she told an NBC light entertainment presenter that she “dresses up for a living, like a retard” - AGAIN, how dressing up for a living relates to intelligence has been lost to the vagueries of vapid light entertainment discussion but sadly the presenter Regis Philbin did not tell his very large prime time audience on or off-air that the actress had said anything wrong.

And the actress herself? Has thus far not apologised.

You’re listening to Technical Difficulties. This is Resonance One oh Four point Four F-M. We are the Art of Listening and these are the open airwaves.
We’re going to have another musical interlude - like quite a lot of disabled people, Signmark is against the wall.
<Against the Wall - Signmark>
This is Technical Difficulties, I am Tim Abbott and this is Resonance 104.4fm.
Last of all in this week’s news round-up, the psychiatric profession is working its way through the latest revision of the DSM - commonly known as the psychiatrist’s bible - which sets the benchmarks of mental illness and wellbeing as well as the terms used to describe those conditions.

Details of those revisions are online here. Interestingly, one of things they’ve done is remove the barrier between Aspergers and other Autistic Spectrum disorders. From what I’ve gathered, this is not universally popular and it seems strange to remove a label that people were quite happy to use without consulting the people who use that label.

It is from that corner of the disability world that we play you out. This is autistic artist Anya Ustashewski with Zippy. For all the Technical Difficulties crew, I am Tim Abbott.
Wear your scars with pride and remember, we all have technical difficulties. Goodbye.

Show 2 was a showcase for Anya Ustaszewski. This show will not be archived online, all music featured is available through the artist, just click on her name above. Thanks to Melanie Clifford for directing Anya towards Technical Difficulties.

We looked at the language and labelling of disability and outlined the approach of the series.