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Accessibility at Royal Society of Chemistry

Duncan McMillan Headshot

Chemistry is a multi-sensory experience. It’s the classic lab science, complete with smells, bright colours, extreme temperatures, strange textures, and the occasional loud noise. Learn Chemistry is a two-year-old project from the Royal Society of Chemistry (RSC) to bring some of that experience of chemistry online in a single area for students and teachers of the subject.

We’re proud of what we’ve achieved so far (finalist for two education awards, winner of a third, and 1.4m users to date), and we want one day to be everything chemistry education on the web, for everyone. But we’ve a fair way yet to go, and that’s very much the case when it comes to supporting accessibility.

That was the conclusion of an audit we commissioned from the RNIB, which began when a member of our team discovered the Institute’s services whilst researching some related work. Grant Broome, a web accessibility consultant based in Wales, performed the audit on the RNIB’s behalf, evaluating accessibility for physical as well as visual impairments.

Learn Chemistry and its sister sites, including our very popular online Periodic Table and Chemistry Calendar, are certainly not AAA-compliant, to use the jargon. But we didn’t commission the report to give ourselves an RNIB-sanctioned pat on the back. The work has forced us to think about what we’ve done already, and about the web developments we’re planning.

In report feedback and discussions, we’ve come to a better understanding of the simple changes we might make to open up the site to more users, coinciding nicely with larger-scale changes being made to RSC websites which have accessibility firmly in mind. The result has been that two other project teams are planning to commission RNIB for further advice.

There are a few simple changes we plan to implement which should significantly improve the accessibility of Learn Chemistry and our Periodic Table, including: adding visible  focus indicators for keyboard-only users, labelling forms better, and adding better markup and alt-text to images and buttons. As with so many things, these aren’t nice-to-have changes for a minority demographic, they represent good practice and clear, quality web design.

The outcome of all this should mean a Royal Society of Chemistry that better serves VI and users with a wide range of abilities on the web. We’ve given ourselves six months to make improvements to Learn Chemistry, so watch this space.

But this work isn’t in isolation. The RSC’s broader ambition is to do more to support and celebrate the diversity of chemists, including those with physical, visual, or other such impairments. Lesley Yellowlees, our President (and the first woman in the post) has placed a special emphasis on diversity during her tenure, kickstarting ‘175 Faces of Chemistry’ – a project featuring an inspiring chemist for every year of the society’s history, in the run-up to our 175th anniversary in 2016.

Anyone needing reassurance that chemistry’s multi-sensory nature shouldn’t put them off pursuing it would do well to read our profiles on deaf chemist and BSL expert Audrey Cameron, on the pioneering (and witty) work done by VI chemist Leslie Bretherick, and on the inspiring career of chemistry teacher Cheryl Alexander.

Our Membership division is driving much of this work, with new roles in their team focussed on this subject. They’re especially pleased with their newly created Inclusion and Diversity Committee, with great representation across sectors, ages, gender and life experiences. The Committee will help steer our work towards better recognition of and support for disabled chemists everywhere.

Even so, we’re only as good as our reputation and the verdict of our users. So let us know what you think of Learn Chemistry (the project I manage), and how we can do better at learn-chemistry@rsc.org. And if you know an inspiring chemist for our 175 Faces of Chemistry project, you can nominate them using our online form.

Interview: Ian Thompson, Liberator Managing Director

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Following on from  interviews we did recently with Paraclimbing World Champion Fran Brown,  disability sex champion Tuppy Owens, and especially, AssistiveWare CEO, David Niemeijer, we now present Ian Thompson,  Managing Director of  Liberator

 

 

 

Liberator have long been a stalwart of the AAC world. According to their website they produce communication aids that: 

“support a wide range of language solutions including Unity, WordPower and text-based systems, are highly flexible, easy to program and backed by unrivalled warranty and support packages.”

…and I can say that my experience with their warranty has been very satisfactory. More relevantly, according to the Domesday Dataset, Liberator account for more dedicated dynamic display AAC devices than any other company, and that makes them important to people who are important to me… 

(If you are interested in other AAC-related articles on the blog, it’s worth looking at the listing here

Me: From the Domesday Dataset, it is clear that Liberator devices lead the market in terms of dedicated touchscreen AAC devices, despite massive recent market upheaval – do you credit this to having a loyal community of users or to having a technological edge over some of the other large manufacturers?

Ian: Our Mission is to help people with disabilities achieve their potential through independent and spontaneous communication. This focus on the communication ability delivered by our Communication Aids is a significant reason why our solutions have been so successful for many thousands of clients all over the World. Outcomes and effectiveness is the key focus for us and we take great pride in seeing the success an effective language system like Unity (Minspeak) can deliver for people of all ages and abilities.  I believe we continue to thrive simply because our clients continue to achieve remarkable improvements in their communication. Clinical professionals and parents both have loyalty to their clients or children, not to a company or software.  We have always held a client-centred view of AAC. We succeed because our clients succeed.

As a business we are used to seeing change in the industry. Our parent company, Prentke Romich Company (PRC), has been operating for over 45 years and were true pioneers in the industry.  Liberator was established in the UK over 23 years ago as the international arm of PRC. We support clients in many different countries and languages and have subsidiary companies in Germany and Australia. We have seen much change over the years globally due to the differing stages of AAC development, support, technology and funding. However, the constant for us throughout this time has been our language solution. Our focus on solutions that enable effective and independent communication has undoubtedly put us in a better position than being merely technology focussed.  We provide the most researched and widely implemented language system in the field of AAC.

Of course technology is a very important element of what we provide. Our number one objective is reliability. We always strive to create devices that will achieve maximum reliability for our clients so they can keep on communicating. However, we also recognise that design and cosmetics are vitally important in today’s World as the iPad has significantly raised the benchmark in terms of desirable hardware.

Getting the balance between creating a robust device with appropriate battery life, necessary amplification / accessory interfaces and a device that has the right aesthetics has certainly become a bigger challenge for manufacturers in recent years.  But I should emphasise that technology is only one component of successful communication and probably gets too much attention. Even consumer companies such as Apple or Samsung can’t sustain technology advantages for very long. Most consumer solutions require extensive accessories to be adapted for communication. Our focus is on technology that works for our clients.  That includes being reliable through the daily use and the years that can go on between funding opportunities.  The consumer solution market isn’t yet old enough to be able to estimate the long term reliability of those solutions.

Me: The more established AAC can claim advantages to tablet based solutions in terms of touchscreen responsiveness, robustness or speaker volume. However, such things come at a price – has there been pressure to compromise on the hardware quality in order to lower prices?

Ian: Price is a key consideration in any AAC purchasing decision and understandably so when the NHS is required to deliver significant cost savings. However, I think we have not done a very good job as an industry in steering an understanding of the cost savings effective AAC can deliver. Our experience over our long history is that many clients that become competent AAC users require less carer support, are included more in society and some will go on to further education and meaningful employment.

So whilst I would prefer to hear more discussion about the benefits of AAC, the positive impact on people’s lives and the financial savings it can generate, we do of course have to be mindful of purchasing pressures. Compromising on quality within our product development would be disastrous for our clients and also bad business for us. We are committed to supporting our devices for years and ensure they are all tested and meet the Medical Devices standards.

AAC companies have always taken the components of the consumer electronics industry and re-designed/re-purposed those components to create effective AAC solutions.  In some ways, tablet computers are just the next generation of that adaptation. We have managed to control prices whilst maintaining quality through different manufacturing processes. As an example our latest device maintains the same level of quality and compliance to standards as well as being much sleeker than the outgoing model, yet is 40% cheaper. This has been possible due to new technology, but also driven by the requirements of the market forcing a much greater and welcome focus on innovation.

Me: App-based AAC companies can point to their ability to quickly release improvements to your users by changing the version on the app store and asking them to update. Do you guys ever feel limited by the nature of your platform?

Ian: I think there are pros and cons of this ability. The majority of our clients and those that support them do not want and cannot easily cope with constantly changing features. Imagine needing to re-learn how to spell words or create sentences on your computer every 6 months. Our language solutions are designed to minimize re-learning as the client’s vocabulary grows. The ability to migrate language solutions across our product range and onto next generation devices drives a need for familiarity and consistency in software versions. These are communication solutions for clients to last a lifetime.

Minimising the need to update is key, but we do have the ability to remotely update our software in addition to the usual internet download or USB stick updates.  Our AAC Consultants are also in regular contact with clients and centres and will perform updates for clients as required.

Me: The effects of the entry of tablet based solutions appear to be levelling off over the last couple of years, but there are always big things around the corner – how do you think the AAC market will change over the next five years?

Ian: A very good question but very difficult to answer especially when you consider what has happened over the last 5 years!

Everyone who works with clients with communication disabilities understands that no single event, the delivery of a device or the downloading of an app, serves as a ‘cure’ for those communications challenges.  AAC is a practice, not a product.  Our clients’ disabilities are usually chronic.  Non-verbal children with autism or cerebral palsy need years to learn language through AAC technology.  That success depends both on delivering the right solutions for those children but also the ongoing support, teaching, training and encouragement.   Even those adults who acquire a communication-related disability later in life typically have those issues for the remainder of their lives. Adults with degenerative conditions often require updates to their AAC solutions, access methods, etc. to be able to continue to communicate effectively.  I hope we devote more attention to the language solutions, the training, the implementation support that these individuals need.

Our ‘wish’ is that everyone recognises the entire stream of events that are needed to enable someone to communicate to their full potential and that as a society we recognise both the human obligation to provide those services and the economic value of enabling people to guide their own medical care, go to school and participate in the work force.  Those of us who work in the field every day see how life-changing this can be.  As an industry as I’ve previously mentioned, I don’t think we’ve done a good job in making the case for the long-term economic value of people who can communicate independently.

I hope that future innovation is driven by the value delivered to the client.  Better technology has always been and will always be one part of that equation.  We need to measure the value of innovation through the lives of our clients.  The capabilities around remote training and support for example, might have more impact on the quality of outcomes in the future than another generation of consumer technology.

Me: I was disappointed not to see Liberator at the Communication Matters conference this year – can you tell me some of the reasons behind that?

Ian: As everyone knows the past few years have been difficult for the AAC industry in the UK.  The issues of consistent and reasonable funding have been discouraging for clients, families and the professional community.  We are always looking for new ways to reach the AAC community and we’re going to continue to look beyond the traditional venues to get more people interested in and knowledgeable about AAC.

In 2013 we launched the Liberator AAC Awareness days and ran 8 of these free to attend events across the country. These are one day workshops that include a wide range of subjects from low-tech to high-tech and clinical aspects like implementing AAC in the classroom. Guest speakers are involved particularly for topics like the highly successful LAMP programme (Language Acquisition through Motor Planning) run by the Centre for AAC and Autism UK.

So 2013 was a very busy year with these new events in addition to other exhibitions and CM Roadshows. Unfortunately the CM Conference was one event we just couldn’t accommodate last year. We will continue to run AAC Awareness days as they have been extremely successful, but the CM Conference is also in our plans this year so I hope to see you there!

Guest Post: Christiane Link, Up-Down London

 

When I was in Vienna some time ago, a good friend of mine showed me Updownvienna.com. This is a web page where you can see at a glance which lifts of Vienna’s tube system are out of service.

I was hooked. I wanted to have something like that for London. I am a wheelchair user and daily user of public transport. I have lost count the of number of times I have been stranded at a broken lift. I contacted Transport for London. I know that TfL monitors all of their lifts and that this data is available. They even provide this information on their own website – very hidden in a lot of text, and you certainly can’t  see at a glance which lifts are out of service. In addition, TfL tweets when a lift is out of service, but again just hidden between other tweets. If you don’t monitor their accounts 24/7, you certainly miss some tweets about broken lifts.

Knowing before traveling which lift is out of service is extremely important for wheelchair users, people with walking difficulties or even parents with buggies. It gives you the opportunity to change your route or you can speak to station staff to organise a cab for you at another station. TfL has a brilliant but well hidden policy that disabled people can use a cab on TfL’s cost, if a lift is out of service and if there is no direct alternative bus route.

For over a year I repeatedly ask  TfL to make their broken lift information more accessible on their website. I spoke with managers, directors and all smiled kindly and promised to do it but nothing happened. Then the beta version of their new website was released. To my disappointment the lift information are as hidden as before. If you want to try it, go to http://beta.tfl.gov.uk – click on “Status updates”, click on “Stations” and then click through every station mentioned there and search for lift information.

After an evening on Facebook moaning about it, I thought “Maybe I just do it myself”. I am not a developer, just a geek with a passion for transport but I am well connected. So I asked my transport geek friends if they know anyone who could help me using TfL’s open data to build a website where you could see broken lifts at a glance. It only took a few hours until Kirk Northrop emailed me. He is an amazing developer and a transport geek. Immediately he was happy to help me with this project.

Within 24 hours he developed the website UpDownLondon.com – strongly inspired by UpDownVienna.com. He wrote a program to use the official data feed for our website. We also monitor TfL’s Twitter feed.

After two weeks of trialing the website, we were sure that the software was running properly and I began to promote the page. Londonist took up the story, people tweeted about it and it was mentioned on several transport websites. UpDownLondon.com has run flawlessly for a couple of months now and the response has been great. We got emails from wheelchair users thanking us for the service and I am benefiting of UpDownLondon myself on a daily basis. No tube trip without checking our own site. I have little business cards with the website information I give out to every disabled person I meet on the tube and people’s reactions are great. Sometimes it’s better to change things yourself than waiting for others to do it.

Interview: Tuppy Owens, specialist in sex and disability

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Following on from the interview we did recently with Paraclimbing World Champion Fran Brown, and then David Niemeijer, Founder and CEO of AssistiveWare, we have a special one today….

Tuppy Owens is a qualified sex therapist and the founder of Outsiders, which supports disabled people to find partners. She also runs the Sex and Disability Helpline, and was a founder of the TLC-Trust, which ‘connects disabled men & women to responsible sex workers & professional sexual advocates’. She’s also written an astonishing range of books on sex, disability and sex *and* disability. Her wikipedia page is here, and I regret that we only had time for a tiny percentage of the questions I wanted to ask…

It should be fairly obvious that some of this content may make some of my more straight-laced readers blush…

Me: You’ve been referred to as “The Sensual Patron Saint of the Disabled”, but a lot of your work, particularly earlier in your career, is more mainstream. Would you say sex and disability is a real focus of your work, or is this the natural result of “Many people talk about sex without regard to people with disabilities – but Tuppy Owens talks about *everybody*”?

Tuppy: Where on earth did you find this title? I hope it was “Sensual Patron Saint of Disabled People?”!

Me: It’s here actually, but we should certainly take the better worded one… 🙂

Tuppy: I don’t feel I was ever what you could call “mainstream” but I started off as a zoologist and switched to publishing my own sex manuals, using my own photography and text, and later the annual The Sex Maniac’s Diary for 23 years — all progressive and certainly not conforming to the norm.

Producing an annual diary gave me spare time, hence having the time to run the Outsiders Club, which has always been my main focus, and unpaid. I now don’t do any writing or work which is not to do with disability, and am currently writing a very outspoken book for health professionals on sex and disability, which will be published by Jessica Kingsley (if they don’t become too scared) this year.

Me: Something that comes up a lot in any discussion of intellectually disability and sex is the issue of consent – not just the obvious issues, but also including recent court cases that resulted in court ordered abortions (and denial of abortions). Many health professionals (and family carers) react to this by effectively requiring celibacy. Do you have a more nuanced view? And if so what do you think the key practical things to consider are?

Tuppy: Of course, I am totally against anything like enforced celebacy. I work closely with Claire de Than, Senior Lecturer in Criminal and Human Rights Law at City University. The law on consent does not stop learning disabled who are labelled unable to consent from being given the chance to enjoy sex, so long as it’s in their best interest, and this is agreed by the team in charge of their care.

The need for abortions may be real, if it’s agreed to be in the best interests of the learning disabled person, if their lives and the life of their baby would be unworkable. I fight for all disabled people to enjoy masturbation, even if they are learning disabled and haven’t fathomed out how to do it, or if they are physically unable and need assistance. Obviously I fight for disabled people to find partners and enjoy sex too.

Me: Some of the text on the TLC Trust brings out the scientist in me. For example “There are sometimes lesbian and bisexual women who hire the ladies on the site, but gay disabled men seem to find what they need elsewhere.” That’s interesting from a research perspective; from talking to people do you think there is, for example, another website used by gay disabled men, or do you think it boils down to a cultural difference?

Tuppy: I think the reason why gay disabled men do not very often join Outsiders or use our male escorts on TLC is a combination of two things.

First, being disabled and gay is just too much stigma for some boys to take. Having put up with staring, isolation and bullying because they are disabled, when they realise they are gay, they may decide this might jeopardise the care their parents or care staff are giving them, or it would upset their parents too much and seem ungrateful! These days they can sneak into what they seek on the internet in the privacy of their bedroom. In fact, disabled gays may find they are more accepted than in the past, but such change has only happened recently. There is still fierce resistence: both disabled and gay boys find themselves forced into heterosexual marriages!

The other thing is sites like Gaydar have sections for blind and people with other impairments. Gay men tend to have specific sexual tastes, and find sites catering to these tastes, and others out there may be happy to find another man with the same tastes, so don’t worry about their impairments. There is even a lovely lady called Amanda Gay Love who runs Queer Hearted workshops in London, and she welcomes disabled participants. Her worshops include Queer Conscious Orgasms which are hands free — may be useful for paralysed and physically impaired people. With such opportunities, perhaps gay disabled men find sex without paying, so do not need the TLC-Trust website.

Me: Last data-nerd question – I saw you carried out some Freedom of Information work to find out if local authorities allowed hiring sex worker as part of a Personal Budget – such a study is quite an onerous quest but the results were fascinating – where you shocked that only 4% allowed it, or was that what you expected and do you think the situation has improved in the last few years?

Tuppy: Of course I was shocked, especially that there was such ignorance of the law — it has never been illegal in Britain to buy or sell sex. Both the media and health and social care professionals promote ‘prostitution’ as illegal and totally undesirable, listening to the religious and feminist campaigners instead of the clients and those wonderful people who actually provide sexual services. One of my disabled helpline callers who has just left college aged 20, told me that the sex education he’d received at school and college was worse than useless and he thought that sex workers who see disabled clients should take on the role! I shall of course be quoting him in my book.

Me: When I speak to people about issues like sex workers, it appears that the people I talk to are much more accepting of a disabled person hiring a sex worker, than they would be of someone who isn’t disabled yet hiring one. I happen to think that this is a fairly patronising double standard, but I wanted to ask if this matched your experiences, and if that is the case, do you see think disabled people really are at the vanguard of overall social change on this issue?

Tuppy: One, they probably think the two stigmatised groups, disabled people and sex workers belong together! I think it’s even more horrid that the public are more tolerant of disabled people using sex workers than finding partners! Disabled couples say they are stared at more in the street than when they go out alone. The TLC website gets more donations than the Outsiders Club, which is sad as the Outsiders Club costs thousands to pounds a year to run, whereas the TLC costs nothing. I think they are giving to “poor frustrated disabled people” whereas I think if you expect a service, you should pay for it, otherwise there is an imbalence. Sex needs to be either mutual lust or love, or paid for.

To answer the last bit of the question, I do always try to add the disability perspective when campaigning for the rights of sex workers — as well as the other laws which ban our sexual freedoms — because it makes a strong argument. If, for whatever reason, the person depends on something as their only sexual outlet, this needs to be taken into account in the law making. There is currently a new bill about the depiction of rape in porn, and I asked the campaign group to add that rape is a common fantasy resulting from people being told sex is wrong, or having been sexually abused when young. Both these include disabled people. That I am not listened to by polititians, shows their callousness and bloody mindedness.

I don’t know if disabled people are actually at the vanguard of social change on this, but there are some disabled men campaigning for sex work being freely available to disabled people and Asta Philpot campaigns for accessible brothels.

I should reiterate that things are changing fast. The public acceptance of people in care homes paying for sex has even reached Northern Ireland, and this amazed me when I appeared on Radio Ulster last year. Getting my outrageous synopsis accepted by Jessica Kingsley shows a great shift in thinking, from the mouldy risk-centred attitudes of the past, to acceptance and person-centred care. Young professionals are joining SHADA (the Outsiders Trust group the Sexual Health and Disability Alliance, up for a Sexual Health Award next month), who are challenging their governing bodies, pressing for the inclusion of sex and disability in training and policies on sexuality to be in place. These pioneers work in the medical profession, social work, and occupational therapy. Sadly, the guidance from the Royal College of Nursing, the only body to actually have sex policy and guidelines in place, has recently vannished and can’t be found anywhere! Naturally, I am causing a fuss!

I am determined to leave this world having won the battle. The problem is that sexual tolerance seems to wax and wane in societies, but at least the documentation will be there for future generations, so long as we don’t get blown up first!

Questions I missed out? Issues you’d like to raise? Let us know in the comments! 🙂 

Masuma Rahim: you cannot run an inflexible Learning Disability service.

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Today’s guest post is from Masuma Rahim, on her clinical placement in learning disability. I invited Masuma’s post for a few reasons – not just because she writes very well but also because she has some very interesting things to say about how the beutacratic scaffording of the public sector holds, or not, communities together.  Masuma has her own freshly formed blog over at http://masumarahim.wordpress.com/, and I invite you all over for a bit of insight. 

 

As part of the requirements of qualification as a clinical psychologist, you have to do a number of clinical placements. In the UK, one of those must be a six-month stint in learning disability.
I came into clinical training through a fairly unusual route, which meant that I had very different experience from that of many of my colleagues. One of those differences was LD – I had never worked in LD services, although I had worked with people who had some cognitive impairment. The criteria for LD are that you have an IQ (a controversial topic in itself) of 70 or less, that there is some difficulty in functioning, be that in academic settings or otherwise and that the difficulties are not the result of illness or a head injury; i.e. that they have been present from a very early age. (In the US, the term ‘learning disability’ is often taken to mean something like dyslexia or dyspraxia. In the UK we refer to these as ‘learning difficulties’. It is not an easy distinction to remember, and even clinicians get the two muddled from time to time.) I was, it is fair to say, going in with little prior knowledge or experience.

Four months in, I think I’m starting to get a handle on working with this group of people. I am in a team which works with those with a learning disability and mental health problems. Not until I began to work in this area did I fully start to appreciate how marginalised some of the people I see are. I have long known that being perceived as having mental health problems can result in stigma and barriers and social isolation and I knew that having an LD was likely to do the same, but the interface of the two can sometimes vastly magnify the difficulties. This isn’t because of the LD itself, nor as a result of the mental health problem – it is purely the result of the way society treats those who are different and of the way that some vulnerable people are exploited. I use the term ‘vulnerable’ carefully – not everyone with and LD or an MH problem is vulnerable and many people with neither of those labels are vulnerable. But in the Venn diagram of such things, there is bound to be some overlap.

One of the things I like about my profession is that, despite having spent a good few years working across a range of services, I regularly get angry. Not with the people I see professionally, but with the people around them. The fact I can get angry about the accommodation in which someone lives or the staff with whom they have to deal or the neighbours who make their lives difficult means I still care as much as I did when I chose  this as my career and that I still believe that change is possible. To my mind, it’s when you stop getting angry that you should re-think the way you earn your living, because that anger signifies a passion for your work. I think most people come into this kind of work wanting to change things (whatever those things may be). The focus might shift over time, in the way that most revolutionary aims change over the course of years, but as long as the will and the belief is there, you can make a positive impact on the lives of the people who come and see you. Virtually everyone who I have met who works in LD still has a desire to change things for the better. Sometimes that’s change which is recognised: those esteemed colleagues who write reports for the Department of Health and inform policy; more often, it’s the people who do their jobs, day in, day out, trying to help people in distress make their lives better. It can probably feel like you’re constantly pushing for the small victories, but as anyone in mental health will tell you, the small victories are necessary if you’re ever to snatch the big ones.

So what have I taken from this, aside from a better understanding of the impact that disability can have? well, I’ve learned that even in an environment where NHS services are becoming more protocol-driven, there is still room for flexibility in service provision; indeed, you cannot run an LD service which is not flexible. I have learned that it is possible to get away from the language of psychology and psychiatry (a language I have always avoided, given that, like most specialist languages, it is designed to exclude those who don’t understand it) and make our ideas accessible to everyone. I have learned that writing reports is made far more fun when you use 100 words and fifteen pictures. I have learned that working in LD requires a particular skill set, but that like all skill sets, it can be learned.

And I have been reminded of something too. I have always said that my job is one of great privilege. Strangers come into my consulting room and they tell me about their pain and their distress and their fears. They show me their vulnerability, a vulnerability that is sometimes so raw that you marvel at their resources. I have often been amazed at the strength and grit of the people that I see; speechless at the difficulties that have encountered and which have threatened to overcome them, but which they have not allowed to do so. Factor in the added stress of physical disability and cognitive impairment, as well as the adverse experiences that can result, and I have been reminded of the strength of human spirit, the resilience that many of us have (but which we perhaps don’t know we have). And again, I marvel. And I think that with enough time and will, perhaps we will see the day when those with disabilities, of whichever variety, will cease to be marginalised and will be seen in the way the rest of us like to be seen: as human, with our foibles and neuroses, but with more binding us together than setting us apart.

Perceptions’ Power to Influence Self-Image

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Terminology found in mainstream news stories about disabilities encompasses the tone behind generally accepted disability perceptions. Words like “sufferer” and “victim” indicate negativity. To those in the disability community who don’t know better, such language can lead to “poor me” mentalities. Personally I used to maintain said attitude.

Hi! I’m Zachary Fenell, an author and freelance writer living with mild cerebral palsy (CP). In my teen memoir Off Balanced, I document my journey from loathing my disability to embracing my disability, a journey that happened to occur during adolescence.

Loathing feels like a strong word but I still think the term proves justified. Growing up I didn’t discuss my disability. Embarrassed, I tried hiding my CP. My disability made me feel inferior to my peers. Why though? The reasoning always came back to being different. Inside my head I deemed different to mean wrong.

Again I ask, why though? Honestly I never fully explored this question, not even while writing Off Balanced. Today that changes. Reflecting back, I theorize maybe the mainstream perceptions about disabilities subconsciously created my self-sabotage.

Sure, as a kid I didn’t pay very much attention to the news. However I wonder where my parents conceived their perceptions about disabilities? Did the popular negative disability perceptions influence their parenting efforts with me? I think yes.

 

For instance, when I moved from elementary school to upper elementary school my parents vocalized concerns over me using the stairs at school. With a rail I can safely navigate staircases but Mom and Dad held anxiety regarding the issue. Therefore, accommodations placed in my IEP (individual education plan) aimed to minimize any danger steps could impose.

Screen Shot 2014-01-18 at 16.29.05Every detail seemed carefully worked out. Seeking to keep my trips on the stairs to the lowest number possible, I received placement on whatever team happened to call the second floor home. Given the cafeteria also remained located on the second floor, going to lunch didn’t require ascending or descending stairs.

Additionally the second floor offered an exit directly to the playground on top the school’s hilly landscape. This turned stairs into a non-issue for fire drills. Then I also left the classroom five minutes early at day’s end so I could descend the steps and go out to the bus without fear that a mob comprising excited children might stampede over me on the steps.

Penning Off Balanced I came to appreciate what I previously considered my parents’ overprotective attitudes. While setting forth to capture their perspectives, I realized Mom and Dad possessed nothing but the best intentions. In the long-term an individual can’t ask for better than parents who care.

The true conflict lay in how society views disability. No, I can’t say with 100% certainty my parents felt extra pressure to protect me because the mainstream media refers to people with CP as “victims” and “sufferers.” Yet I know surely such word choice didn’t help.

Bottom line, something apparently small like terminology carries incredible impact. Language indicates attitude. Attitude influences behavior. Behavior can shape self-image. If able-bodied society stops viewing people with disabilities for their challenges and focus on their abilities, I believe disability related embarrassment, inferiority, and other negative sentiments can become less prevalent internally within the disability community.

Off Balanced Book CoverZachary’s memoir Off Balanced (available on the Kindle and Nook)

 

 

What do you think? Sound off by commenting below.

Personal experience with his own disability, cerebral palsy (CP), drives freelance scribe and author Zachary to utilize writing and social media for promoting disability awareness. Zachary’s memoir Off Balanced (available on the Kindle and Nook) explores how his CP affected him socially throughout adolescence. To learn more about Zachary, visit www.zacharyfenell.com.

 

 

 

Interview:AssistiveWare CEO David Niemeijer, where AAC is and where it’s going.

David website

Following on from the interview we did recently with Paraclimbing World Champion Fran Brown, which was very well received, we interview David Niemeijer, who is the Founder and CEO of  AssistiveWare, makers of the famous Proloquo2Go.   

AssistiveWare were very much at the vanguard of the tablet revolution in AAC that I keep banging on about, and they remain the go-to solution for Tablet AAC (It’s the approach my little brother uses as it happens, and that’s quite the accolade). I feel very lucky that I got to ask David the questions I did, particularly given how illuminating his answers were. Well worth reading.

(If you are interested in other AAC-related articles on the blog, it’s worth looking at the listing here

Me: Proloquo2Go has an absolutely dominant position in the AAC app marketplace, despite or perhaps because of, the much higher cost of the app. Do you think that your pricing strategy has been key to your success?

David: In 2009 when we first presented Proloquo2Go at a conference in the US a few weeks before release, we demoed the app and asked people what they thought it should cost. Around US$ 2,000 was the first figure people mentioned. When we said it would be lower they descended to US$ 1,200. The lowest people could imagine was US$ 600. When we announced that the price would be around US$200 people told us we were crazy (at present Proloquo2Go costs £150  including VAT). People said that it was simply not possible to sell at such a low price. Dedicated dynamic display devices ranged in cost from US$2,000 to over US$12,000 at that time. What we aimed for was that an iPod touch (the iPad didn’t even exist at that time) with Proloquo2Go and a speaker case would cost less than US$500. We wanted to provide access to high-end AAC to all the people who did not get funding and who could not afford buying a solution costing several thousands of dollars out of pocket.

At the same time we knew that the AAC market is quite small and that we had to pick a price that would be high enough to be able to continue to invest in further development of the app and cover the costs of providing good support. We are now in our 5th year of free updates and have five team members providing 24/7 email support with a typical response time of a few hours. This would never have been possible had we priced the app lower. What is interesting is that we demonstrated that apps did not have to cost a few dollars to be successful and this has allowed other AAC apps to be priced higher too, which is a good thing as otherwise there would have been far fewer AAC apps and most would have never gotten updated and improved over time. Note that by no means we are the most expensive AAC app. There are several more recent, AAC apps that cost significantly more than Proloquo2Go.

So I think our pricing strategy has allowed us to continue innovating, investing in developing new features, in creating the first-ever genuine children’s Text to Speech voices (the British Harry and Rosie voices) and pushing the app and the AAC field forward. However, the success of the app is not in the price, but in the fact that we continue to improve and enhance the app, that we invest a lot in quality (we have four people doing full-time software testing) and that we put a lot of effort in providing good learning resources (manuals, PDF tutorials, e-learning videos) and top-notch support. Later this year we will release Proloquo2Go 4, another free update, which will be bringing some exciting innovations.

But the true success of our strategy has been that we have been able to make high-tech AAC more affordable and more user friendly, bringing AAC to two to three times more people every year than was the case when there were only dedicated devices. For example, there are now so many kids with autism that have access to high-tech AAC while in the past it was mainly kids with significant physical impairments. Similarly, we find that kids get access to this kind of technology at a much younger age now, often allowing them to enter mainstream education where in the past they would have been in special schools simply because they had no way to effectively communicate. We know that access to communication leads to behavioral, educational and other benefits. Being in a position to contribute to those benefits is very fulfilling.

Me: At the Communication Matters conference this year I chatted to one of your coders, and to my pleasant surprise he really was a coder (one of my bugbears about the state of the AAC industry is that I keep meeting salespeople who fake technical knowledge to vulnerable people in order to sell an expensive bit of kit) and we had a nice chat about memory management and lazy evaluation. Do you have a distinct policy of making sure that customers meet coders regularly or is it a useful consequence of having a relatively small and agile team?

David: Actually, all but one person in our product design team is also an experienced developer. For example, I did all the development work on Proloquo2Go myself until mid-2011, when as a CEO of a growing company I no longer had the time for it. These days we have a design team where we combine assistive technology expertise, AAC expertise, interaction design expertise, and IT expertise. We design new features and enhancements as a team. Through several iterations we refine the designs so that we do not simply bolt on new features, but integrate them into the products while at the same time enhancing ease of use. As a rule of thumb we spend just as much time looking for ways to simplify and streamline the user interface as on designing new features.

In order to do a good job it is vital that everyone in the company is exposed to the AAC users, families, therapists and educators that use our software. So it is indeed our policy to create opportunities for everyone to go to conferences, visit schools, and meet users. Additionally, we develop and discuss case studies (often in video form), make sure that those attending a conference get to go to sessions, etc. We also ask our support team to share interesting cases as well as feature requests with those team members involved in product design.

That said, costs of conferences and travel are high so we cannot create as much interaction as we would like, but we do what we can. For example, after Communication Matters we went to visit an AAC center and a special needs school. I personally consider such interaction vital to get inspiration, to get motivation and to better understand the realities in the field.

Regarding sales people, we actually do not have any sales people. The team members going most frequently to conferences are those involved in product design, support and training.

Me: Many of the more established AAC manufacturers point to having control of the hardware as being an argument for being able to claim advantages to tablet based solutions in terms of touchscreen responsiveness, robustness or speaker volume. Do you guys ever feel limited by the nature of your platform?

David: Of course no platform is ideal. Speaker volume is probably the most limiting aspect of using an iPad for AAC. But there are robust speaker cases that can resolve that. Access is another issue, but Apple is working very hard to improve access options. With iOS 7 they introduced the first iteration of Switch Control and perhaps one day there will be head and eye tracking too. In the mean time, those are areas where traditional devices excel.

On the positive side, iPads are affordable, mainstream and do not make the user stand out. They are also multipurpose and there is a huge number of apps available covering the entire spectrum from fun to serious. We have found that in many cases iPads tend to get much more use than traditional dedicated devices that often gather dust because they are considered too heavy, cumbersome or expensive to use all the time.

So every platform has its pros and cons. We do not feel the need to conquer the world by being on every single platform or device. We prefer to do the best possible job on one platform rather than a mediocre one just to be also on Android and Windows. Other companies serve those operating systems or create dedicated devices providing good solutions for people who do not want to use or cannot use an iOS device. So people have plenty of choice, even if we stick to iOS.

Me: One of the advantages of app-based AAC companies is the ability to quickly release improvements to your users by changing the version on the app store and asking them to update. Can you give me an example of a user suggestion that you implemented, and perhaps give me an idea of how long it look before it was available to users?

David: I would argue that all our features are derived from user feedback (and, very importantly, observing users using our software). Some features are direct translations of user feedback, but in many cases the best features are inspired by latent needs users have that they cannot describe or imagine could be addressed. Most users are not software or interaction designers. They do not know what is technically feasible, they are not aware of the bigger picture (the needs of other users or those working with users). So it is our task to take all the individual requests and our own observations and establish the bigger picture and based on that look for innovative ways to move things forward.

I think it is not entirely true that because we do software (and not hardware) we can do quick releases. We need to be careful not to just bolt individual new features on, but integrate them as consistent sets of features. We also need to update manuals, tutorials, e-learning videos and, very important, have our team of testers thoroughly test after any changes (however trivial). We used to do quite a few minor updates adding a number of new features with each update and we have found that this actually significantly slowed down the development of the major updates because of even small changes can lead to bugs that need to be found (testing), fixed (developing), verified fixed (testing) in addition to updating all documentation. So we are now focusing on fewer, larger updates.

All this said, there are times where there is a clear one-on-one relation between feature requests and updates. For example, we released Proloquo4Text, our text-based AAC app in November last year. The response has been overwhelmingly positive but several people remarked that they found the icon of the play button and some of the other buttons a bit small. We had designed them in standard iOS 7 style. We have now reworked them to be larger and increased the line thickness to better serve both users with visual impairments and those with limited fine motor control. This will be part of Proloquo4Text 1.1 at the end of this month. In that same update we are also adding a feature that was not requested by any Proloquo4Text user, but that we know some people will find useful, because we received some requests for it for Proloquo2Go (and yes, in the future we will add it to Proloquo2Go too), which is support for selecting suggestions from the word prediction using keys on an external Bluetooth keyboard. So one feature is a more or less direct translation of user feedback on Proloquo4text while the other feature is based on our knowledge of wider needs that have not yet been expressed by any Proloquo4Text user.

Me: So as the very visible (at least compared to other AAC companies) CEO of the youngest major supplier of AAC software, how do you think the AAC market will change over the next five years?

David: I would expect:

  • A further emphasis on AAC on consumer devices.
  • A greater emphasis on user interface design and ease of use
  • Growing support for users with significant physical impairments in consumer devices
  • Consolidation in the AAC app market, which is now flooded with lots of very small app companies that price their apps too low to support continued development
  • Further consolidation in the dedicated device market.
  • A strong growth in the number of high-tech AAC users as users migrate from low and mid-tech solutions to high-tech consumer device based solutions.
  • Hopefully finally a growth in the number of AAC experts to support the growing user base

That last point I consider as today’s biggest challenge. Access to high-tech AAC is now more affordable than ever, but there are far too few therapists specialized in AAC to really help people get the most out of the apps they purchase. In that light, it’s worth reading our survey from March 2012.

A Square Peg, A Round Hole & Sandpaper

I should introduce myself first, give you a bit of background on why I think I should be able to talk to you with any sense of authority or kudos. You see, I’m not highly qualified in disability, I’ve not done a degree in disability studies, read all there is to read about disability rights and issues or even lived in institutions designed to support people with disabilities.

 

What I have done though, is lived for my entire life (30 years and counting) as a disabled person; I have Muscular Dystrophy, in a mainstream world.

Let’s acknowledge siblings of disabled children

Today’s guest post is on a issue that is very dear to me and to a lot of people I care about. Everyone should pay attention. I’ve touched on the overwhelming dominance of (well-written, touching, and insightful) disability blogs written from the point of view of a parent, and it’s really nice to find a charity like Sibs that looks at things a little differently.

Today’s guest blogger is Monica McCaffrey, the Chief Executive of Sibs, and I encourage all siblings, parents and professions to visit the Sibs website, which is a treasure trove of information and empathy.  The photo isn’t supplied by Monica – it’s me and my little brother, over a quarter of a century ago

Joe

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Guest Post: Andrew Crooks on National Children and Adults Services Conference 2013

Note from Joe: We had such a positive response to our earlier guest post on metal health, that I’m going to try and arrange a few more guest posts on a regular basis. If you are interested then please let me know, particularly if you have a different opinion to something I’ve written – I do like to get a balanced view.

Today’s post is from Andrew Crooks, who recently attended the National Children and Adults Services Conference 2013 and who kindly argreed to give us his opinions of the event. Andrew is a service user who also works with Care Opinion, a lovely little project that I’ve been hearing good things about. We should be clear though Andrew is blogging here in a personal capacity and the views don’t necessarily reflect those of Care Opinion…