Models of disability - Topic 3

This entry isn't in answer to a specific activity (yet) but I've been reading about different models of disability and I guess I just want to process some of this information from a personal point of view before applying it to the course and my work.

I hadn't heard of the concept of  'models of disability' before. This is new to me but I've been thinking about it for a week or two. I even made some notes on my trusty whiteboard about it. Then I took a photo of it. Then I realised that anyone with a screen reader can't access the information that way. So here is the information in a format that a screen reader can process (I hope).

Medical Model disabled people are the problem they must change/adapt society doesn't need to change	Rehabilitation Model disability is a deficiency which must be fixed rehabilitation needs the intervention of professionals
Functional Model aims to adapt functionality for the needs of all gathers information and develops accordingly tends to relate to online environments only	Social Model disability is caused by barriers in society society must change/adapt
Post-social Model everybody has imperfections/impairments normal is a myth	Charity Model disabled people are tragic, weak and helpless disabled people need others to do things for them

My thoughts on these models

I think there's an element of truth in most of these models, at least for some disabled people. On the surface, I like the social and post-social models because they seem to empower disabled people and they recognise the fact that many of the things we struggle with are not just because of our impairment but because of something in the environment.

The model I least identify with is the charity model. I am not tragic, weak or helpless and I can do most things for myself, with varying degrees of effort. I'm also not keen on the rehabilitation model because I frequently come face-to-face with the attitude that I'm broken and need fixing and in my opinion, nothing could be further from the truth.

The model that has disturbed my thinking the most is the medical model. Referring to me as problem is pretty offensive and I think that society still needs to change quite a lot, however I gain a lot of self-esteem from my own ability to adapt and change. It's like problem solving.  Here's a couple of examples...

When I first started using a wheelchair, I couldn't open doors and get myself through. I'm quite a big lady and my chair is on the wide side, so if somebody holds a door open, I often still can't get through, not without running them over. I experimented with different ways of doing doors, until I worked out a way that works for me. As I open the door I use the momentum of the door and the opposite frame to pull myself through. That way, I also don't trap my hands between my wheels and the frame. Nobody had to change the doors or how doors work. The problem was not with society and its design of doors. The problem was that I hadn't yet learned how to adapt an activity that I had been competent at from toddlerhood. I adapted and changed and the problem went away.

Before my injury, I was a teacher. Teachers work way harder than most people realise, often putting in between 50 and 70 hours a week. Let's stop there - society needs to change! But society needs to change and recognise teachers for the hard work they do and to stop expecting the impossible from them. Not disability-related! I found that post-injury, with all my physio and extra physical needs, teaching became impossible. I could have stopped giving it 100% and just done less but I would have become a failing teacher. So I changed and adapted. I could have gone to the other extreme, given up work and entered the charity model, but I'm still more than capable of working - just in the right job.

In both of these situations, I would say that my disability was the problem. That's not quite the same as saying that I was the problem. I have become quite a confident disabled person though because of my capacity to adapt and change. If that was taken away from me, I would maybe have an easier ride but I would become less. It would make me feel like a victim and would disempower me. So whilst I feel that I should really object to the medical model, actually I don't. I can see why others would disagree though.

What is accessibility? - Activity 2.2

What does accessibility mean to me?

Accessibility is more than merely accommodating and adapting to the needs of disabled people. It is about ensuring that all reasonable attempts are made to make learning equally available to all. Although accessibility is often considered in relation to disabled people, within my professional context, there is an equal need to consider language, culture and socio-economic factors.

Why are people working to improve access to online learning for disabled students?

Why wouldn’t they? In the crudest terms, learning is a business. If we alienate any group of people, we limit our ability to earn money. Hopefully, there is also a moral and ethical sense of duty to ensure equality of access for all. Even if that moral and ethical duty is absent, the law says that institutions should do this.

Main issues arising from Seale Chapter 1

·         Definitions  - as with most academic works, key terms are defined for the purposes of this paper.

·         Reflection - the author reflects on how her views have changed since the first edition of the book, being honest and critical of her previous work and seeking to improve it.

·         Silence - as well as writing about what has been said and researched, Seale talks about the need to consider what isn’t said and what isn’t researched.

1.    According to Seale, all the players in accessible online learning have their own perspectives and their own stories to tell.

o    What is your perspective?

I have a dual perspective. From a personal perspective, as a disabled student, I expect institutions of higher education to make every effort to ensure that online learning materials are fully accessible. From a professional perspective, faced with an overwhelming range of disabilities, each of which expects me to make every effort to ensure that our online learning materials are fully accessible, the task seems impossible.

My observations of attempts to ensure that various aspects of everyday life are accessible to all, would suggest that there is often conflict between the accessibility needs of people with different disabilities. For example, whilst textured paving is essential to blind people, giving them information about hazards, the same textured paving can create a barrier for people with some mobility disabilities, causing a trip hazard or vibrations through a wheelchair. In the same way, it is likely that attempts to make online learning accessible to all, could result in opposing needs creating conflict.

o    What events, people or objects have influenced your current perspective regarding accessibility?

Personal experience, the experience of family and friends, and twenty-three years working in education have influenced my current perspective regarding accessibility. Human beings have a tendency to be somewhat self-centered. It is easy to assume that our personal needs have greater importance than the needs of others. This can also be seen in the expectations of disabled people and their expectations in terms of accessibility.

Perhaps more understandably, it is also assumed that those with more common disabilities should take priority when considering accessibility requirements. For example, dyslexia is relatively common and is probably near the top of the list of learning disabilities that teachers aim to accommodate in their teaching. It is widely accepted that a dyslexia-friendly classroom is good for all learners, with bright colourful visual displays and a rich multisensory learning environment. This kind of environment could, however, be overwhelming to a learner with sensory overload, causing them to shut down and block out all the excess noise.

My current perspective is that rather than using accessibility guidelines as lists of definitive rules, we should aim for open dialogue with learners (disabled and non-disabled) so that accessibility needs can be discussed and a ‘best fit’ found for each group of learners.

o    How conscious are you of these factors when you are reading and thinking about accessibility issues?

At this stage, I am a little sceptical when reading and thinking about accessibility issues. I hope to be convinced that academics in this field genuinely have the best interests of learners at heart.

2.    If you were to conduct an analysis at this point in time, of the costs and benefits for you personally as a learner in studying this module online, what would the analysis look like?

o    Would there be more costs than benefits?

Up until now, I haven’t given much thought to the costs and benefits of me studying for this module. I suppose, in terms of the whole qualification, I weighed up the pros and cons before committing to an expensive course of study, but I didn’t focus on the benefits or costs of studying online as opposed to face-to-face. At the time, it just seemed the most obvious way of combining part-time study with full-time work.

Costs:

•  financial
• time
• energy

Benefits:

• convenience
• study from home
•  flexible
• enjoyable
• practical

o    Are they evenly matched?

Overall, I would say that there are more benefits than costs for me studying this module online. Perhaps the benefits were so obvious and so obviously outweighed the costs, that I did not see the need to consciously think about this.

o    What factors helped you to decide you could cope with studying this module online?

For me, there was less consideration about my ability to cope with studying this module online than there would have been if it had been face-to-face. Because my disability is physical and affects mobility, studying in a brick uni would have posed a greater concern. Would I be able to park near to the building? Would I be able to access the building? Would the layout of furniture make me feel inconvenient? Would I fit in with my peers? How much stuff would I have to carry? Would I be able to access the library? Would there be accessible toilets? Would frequent toilet visits become embarrassing? The list is endless.

Studying online, however, triggered none of these kinds of questions. The idea of studying in my own home, at a time which is convenient to me, with easy access to a toilet and refreshments, able to take breaks at my leisure, and not have to actually go anywhere, seems to me the perfect arrangement.

3.    If you attended a conference where the main theme was making online learning accessible, what kind of information or evidence would you wish to hear from the presenters that would help to inform or change your practice?

If I was attending a conference, I would not want to hear what I already know about. I would be looking to learn something completely new. As such, I would hope to be presented with challenges to my thinking, regarding disabilities that I may not have considered before, presented by people with those disabilities, giving practical advice about how I, as a manager, can make online learning more accessible.

4.    Thinking about accessibility:

o    Why do you think some students do not declare their disability to the institutions in which they are studying?

In my work context, this is a very common problem. There are a number of reasons that I am aware of, why some students do not declare their disability. These include:

·         fear of discrimination

·         differences in culture (especially ESOL learners)

·         previous negative experiences

·         no diagnosis/learner unaware of disability.

There are also probably other reasons for not disclosing a disability, which I am completely unaware of.

o    Does it matter if an institution does not know the exact numbers of disabled students registered on its modules and the exact nature of their learning needs?

I do not think it is necessary for an institution to know the exact numbers of disabled students registered on its modules. It is more important for every tutor to get to know that their students as individuals, identify any barriers to learning and nowhere to access a range of tools to overcome barriers to learning. It is, however, useful to know numbers for monitoring purposes and for targeted evaluations.

Change of thinking following discussion in OUSA Disabled Students group: If an institution doesn't have accurate data about numbers of disabled students, there is the possibility that a 'no news is good news' culture may develop, where there is an assumption that we don't have many disabled students and therefore do not need to consider adaptations.

o    How necessary do you think this information is, in helping institutions develop accessible learning?

Again, I do not think it is essential to have specific, exact information in order to develop accessible learning. It is useful in terms of monitoring and evaluating accessible learning but I think attitudes, at all levels of the institution, play a greater part in the success or failure of developing accessible learning.

o    In what way might such information help an institution improve the accessibility of its online learning material?

Statistics about particular disabilities and numbers of students with disabilities can help with the development of accessible online learning materials, ensuring that the most common disabilities are given priority. The downside of this, is that less common disabilities may not be given the attention that they need.

5.    In our working lives we are all constantly managing our identities – both public and private.

o    What aspects of your identity do you openly reveal to your work colleagues or students?

I am happy to openly discuss my visible disability with work colleagues and students. I do not find it offensive if people ask questions about my disability or the way my disability affects me. I actively seek situations where I can challenge people with disabilities to achieve to their full potential, using my own experiences to inspire others.

o    What aspects do you reveal in a more selective manner (if at all)?

I am more selective about revealing some of the invisible disabilities I have, particularly those of a sensitive nature. Whether or not I will openly discuss these, depends on how well I know the person, my expectations of their response, and how much I think they would benefit from knowing.

o    Are there any aspects of your identity or information about yourself that you would feel uncomfortable revealing to work colleagues or students?

The only aspects of my identity which I would feel uncomfortable revealing to work colleagues or students, are those which might compromise my professionality. There have been occasions where I have not revealed something which might have been helpful to the person, because of the risk of it negatively impacting on my reputation.

Talking about disability - Activity 2.1

I've started working through some of the module materials for the first two weeks. When I study, I like to work through a section once, then go away and mull it over and then come back and do it again. Even weeks after a section has finished, I sometimes go back and have another look because my thoughts and opinions change with new learning over time.

This activity focuses on the language we use to talk about and explain disabilities and accessibility. As part of the activity, I encountered the usual lists of what you should say vs what you shouldn't say. I mostly agree with these, though they change over time and of course, individuals have their own preferences. I generally try to say the right thing and not to use offensive language but I think it's important to get to know people as individuals and listen to how they talk about their disability.

Earlier this week, I was interviewing some people and one of the questions was about equality and diversity. Now bear in mind, I was sitting right opposite each candidate, in my wheelchair. There was an obvious reason for being careful with choice of words. Two people used the phrase, "people who have something wrong with them," when referring to disabled people. I actually found this phrase more offensive than any of the outdated terms that everyone knows not to use.

I don't know what bothered me more, the fact that they immediately focused on disability in regard to equality and diversity, or the inbuilt belief that a disabled person has something wrong with them. And it must be an inbuilt belief, to have used that phrase when talking to a wheelchair user.

I've got a book called "What's Wrong With Timmy?" I love the book. It's about a child who meets a disabled boy called Timmy and at first, is reluctant to make friends because she doesn't understand and she has all kinds of fears about him. Her mum talks to her about Timmy and gradually the two become best friends. What I like about the story, is that fears of the unknown are natural and normal but getting to know a person is key to understanding them. At the end of the story, the child is asked by another friend, "What's wrong with Timmy?" and she confidently declares that there is nothing wrong with Timmy, nothing at all!

Not just language

Of course, we should choose our language carefully but there are other ways that we need to be careful about how we interact with disabled people, as well. On my other blog, I have a 'wheelchair etiquette' page. Some of these 'hints' are general good practice and some are just my personal preference. Feel free to have a look and ask any questions.

Set Book

This module is the first one I have studied, where it isn't possible to get started a couple of weeks ahead. For me, this has been an important factor in succeeding at my studies. I know that at least once during each module, my body will throw something at me that will mean I can't study for a week or two. If I can get ahead at the beginning, that buys me a buffer that stops me getting behind. This module, everything apart from the study materials is locked until the course start date and almost every activity depends on tutor group interactions. I am already concerned that I will struggle to keep up with this module, which is ironic when the whole point of it, is accessibility.

Well, the one thing I can do, is start reading the set book and make some notes as I go. Hopefully, that means I won't have to spend as long reading later on. So let's start with a quick overview of the set book.

You'll notice that this is a custom edition. It's a combination of the second edition, with three chapters from the first edition. Looking ahead, I think the End of Module Assignment (EMA) is based on those three chapters.

The book is in four parts:

1. Contextualising the scene
2. Surveying the scene
3. Critiquing the scene
4. Re-imagining the scene

I'm assuming 'the scene' is the world of e-learning, as it relates to disabled students. 

As I suspect this book will be often quoted in assignments, it would be sensible to know how to reference it using Harvard referencing, OU-style.

In-text citation	Full reference
(Seale, 2014)	Seale, J. K. (2014) E-learning and Disability in Higher Education: Accessibility Research and Practice (2nd edn), [ebook reader], Abingdon, Routledge.

In the preface, we find that the first edition was written seven years before the second edition. The purpose of the second edition is to "critically examine whether or not accessibility research and practice has significantly advanced" (Seale, 2014) in that time. Honestly, you'd like to hope so but I suspect it hasn't advanced as significantly as it should have done.

Role and context - Activity 1.3

Where I work

I am an area manager for the local council's Employment, Education and Skills team. I am responsible for two adult learning centres, the courses that run from these and the tutors who teach for us. We are a provider of further education offering a range of services, of which 19+ adult education is the biggest.

When learners register with us, we ask them whether they have a disability and if so, what kind of disability they have. We know that we have some learners who either don't disclose their disability or have an undiagnosed disability and we try to work on the basis of getting to know each learner as an individual and providing them with the support they need to enable them to learn effectively. Whether or not they disclose a disability is largely irrelevant, though it is helpful to begin with all the information.

The majority of our learning takes place face-to-face, in the classroom, however we have a virtual learning environment (VLE) and we encourage learners to use this to extend their learning outside of the classroom. The success of this varies across the different subjects and tutors. As far as I know, we have never specifically looked at the accessibility of our VLE, though we have consciously improved the physical environment to improve the accessibility of our centres.

What I hope to learn

As a physically disabled person, I consider myself to know a fair bit about mobility issues and accessibility. I am less confident with supporting people with a whole range of learning disabilities to access further education. Having said that, I have some personal and previous work experience with autistic spectrum conditions, such as Asperger Syndrome.

What I have noticed in both physical and online environments, is that there can be conflict between the different needs of people with different disabilities. The main thing I want to learn, is how I can effectively balance these varying needs, so that all learners get a good learning experience.

My experiences of learning online with disabilities

The first part of the module is concerned with the learning experiences of students with disabilities. It looks at the technology that students use to adapt computers to suit their needs. It introduces the responsibilities of institutions for the provision of an accessible curriculum and appropriate support systems. (from the OU module details page)

When I signed up for this module, I didn't really think about the fact that it is highly relevant to my own situation. It was just another module that I quite liked the sound of and would get me 30 credits closer to my Masters.

For the most part, I think of myself as having a disability. Singular. Really though I have two or three. It's just that they are less noticeable.

CES

The disability I consciously think about, began in 2012 with a rare spinal cord injury, cauda equina syndrome (CES). That left the nerves down the side of my left leg and foot damaged and consequently, I have mobility difficulties. I choose to use a wheelchair to enable me to function normally in life and that gives rise to a visible disability.

The presence of a visible disability means that the less visible stuff sometimes goes right under the radar. The less visible but far more disabling side of CES is the effect on the bladder. I'm just relieved that I have no exams to survive for this qualification!

ET

Then there's the condition I have had since childhood, that I barely think of as a disability. I was diagnosed with essential tremor (ET) in 2012 but have had it for as long as I can remember. As a child, it was assumed that I was just a bag of nerves. I saw psychologists and various other specialists, who all failed in curing my nervous disposition. Having said that, I shouldn't be too harsh about them. I was a bit of an odd child. I'll come back to that later.

So ET makes my hands shake (a bit like mild Parkinsons) and for a while, I thought that was all. The wonderful thing about social media though, is that you can now be in touch with others with the same condition and discuss what's 'normal' within that community. There are several related symptoms, that many ET sufferers experience:

• migraines
• severe writer's cramp/slow writing
• difficulty typing (lots of double letters)
• poor balance
• muscle weakness

From a study point of view, these are much more disabling than my mobility issues. But there's one thing which has an even greater effect on my studies.

AS

I've never been assessed or diagnosed but family history on my father's side and the diagnosis of one of my children, leads me to the conclusion that I share some Aspie traits. Asperger Syndrome (AS) is an autistic spectrum disorder. It centres around a triad of impairments:

• communication
• interaction
• imagination

I don't have extreme difficulties with these now, though I did as a child. Now, one of the things that I find most difficult is reading past mistakes. Whereas the human brain is apparently wired to make sense of text, so that we can not notice spelling mistakes (provided the first and last letter is correct) and punctuation, etc. my brain seems wired so that mistakes just confuse and confound me. This is a real pain when reading forum entries on module websites. I'm expected to show consideration to students with disabilities such as dyslexia (and as much as possible, I do) but I can't really say that their disability is showing much consideration for mine. Lack of engagement in an online discussion is usually an indication that I don't understand something because of typos. 

Disabled student support

When I started my studies with the OU, I applied for DSA (disabled students allowance). That provided me with a chair. I love my chair! After my wheelchair, it is the comfiest chair I have. It supports all the right bits of me and means I can sit for extended periods of time to study. 

I also have a headset and Dragon software. I don't use that all the time but it really helps when writing assignments. I talk into the microphone and Dragon types it all up in Word. This means I can sit in a good position for my back and I don't get pain in my arms from too much typing.

In my first module, we had books. Real books. Made of paper. I was also sent electronic versions of them, so I could put them on my Kindle and read without the weight of them causing back pain. In reality though, I still used the paper copies because I like to highlight relevant sections. It was partially helpful though.

Summary of my thoughts

1. Disabilities can be visible and invisible. People assume that what is visible is worse than what is invisible but really it's often the other way round.
2. The different needs of people's different disabilities often clash with each other, both visible and invisible. Everybody thinks their disability is the worst and therefore should be granted most allowances. I think we should all try to make allowances for each other.
3. We are more aware of disabilities now, than at any other time in history. There is more support available now than ever before. We've still got a way to go but we shouldn't forget how lucky we are to be living in the 21st century.