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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

Zach Head Shot June 2013

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.

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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.

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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… 

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An interview with Paraclimbing Champion Fran Brown

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Today we have our first interview! Fran Brown became a Paraclimbing World Champion in Paris in September 2012, and is we catch her just after winning gold at the Paraclimbing Bouldering International Open 2013, in Laval in France.  Fran climbs in the NPD B class classification and you can find out much more about her at either http://www.franbrown.org.uk/ or on Twitter as @franrbrown.

 

So most of our readers haven’t got much experience of climbing – can you tell us how big a sport paraclimbing is, in the UK and the world?

In the UK, it’s still a relatively new sport and therefore quite small in comparison to, say, able bodied climbing or more mainstream sports. It is however growing every year. Internationally, the sport is starting to be integrated into main able bodied competitions thus giving us greater exposure which is also helping the expansion of the sport. This year there were five international competitions, four of which were IFSC comps and next year there are plans for even more.
You’ve been world champion in one sport, and you’ve had heavy involvement in others – you also took part in the Paralympic opening ceremony – it’s quite the impressive list. What would you say was your greatest moment in sport?
Winning the para climbing world championships was definitely my greatest moment to date . I really enjoyed the paralympic opening ceremony but I was working as a performer so it wasn’t really a sports thing, more of a job.

 

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A lot of outdoor climbing takes place in areas of incredible natural beauty, but they can be quite remote – do you find that there are some places that it’s just not possible to reach with a wheelchair?

Some places are impossible to get to, which is frustrating. Others are difficult but manageable with a lot of support and planning. It helps that I am willing to accept a piggyback where maybe others wouldn’t but it is a pain sometimes having to rely on others and to ask for help, but if thats the only way I can get somewhere then I am happy to accept help. Thankfully the people I normally climb with are pretty clued up on what I can and can’t do so we work well as a team when trying to get to less accessible places. I’d like to get an off-road wheelchair which would make things easier but they are thousands of pounds so I can’t afford one right now.
Any world champion has to commit to a gruelling training session. Can you take us thought a typical training week?

My exact training schedule depends on the time of the year and which training phase I am in but roughly when I am full time training, its 5 sessions of climbing a week, 2 fingerboard sessions and 2 gym sessions, a swimming session and a rest day or two.
Living in London you are somewhat spoilt for choice with climbing places you can train – have you got a ‘home’ gym, and what makes that place so appealing to you?

I climb predominantly at The Arch, located at the biscuit factory in Bermondsay. They are a bouldering wall which I love as I can train there on my own and the atmosphere is great. The guys there support me wherever they can and have been sponsoring me for a couple of years now, helping with travel and accommodation for me and my coach for competitions. The vibe at the Arch is also great and there are always friendly people to climb with which makes it a cool place to train.
Lastly – if one of our readers wanted to get involved in paraclimbing – what do you think is the single most important piece of advise to have?
Persevere. It’s sometimes frustrating when people don’t understand how climbing works for someone with a disability and perhaps not knowing other disabled people who climb but it’s worth it in the end. Also contact the BMC who can advise about any local clubs and competitions for those with disabilities. The best advice I can give is that having a disability need not stop you climbing or accessing outdoor crags, it just means you might need to be more inventive and openminded.

Guest Post: Risk in mental health by Pickle

Note from Joe: over the last few months I’ve been more and more aware that I know very little about the interaction between mental disability and mental health. (I’ve also been deeply astonished by people in both camps very much ‘washing their hands’ of the other.  I’m pressuming I can’t be the only one embassed by this so I’ve asked `Pickle’ to do a couple of guest blogs on mental health related subjects.   Pickle works in mental health and is, in fact, my go-to person on a range of things in this area.  

 

A little while ago, I went to Belfast for a conference with a very long title (they always seem to have very long titles) but it was a 3-day affair focused on forensic psychology; i.e. mentally-disordered offenders. This is one of my primary clinical and research interests and I remembered while I was there, as I always do, how much I miss it since I’m not in forensic services at present. I have been thinking about forensic psychology quite a bit recently, especially since Ian Brady’s Tribunal coincided with the event and since Jon Venables was granted parole in the weeks earlier.

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