iPad and Disability
Reams of text have already been written about the ‘amazing’, ‘magical’ iPad but it something else to use it as a disabled person. Macs have always been reasonably disability friendly, having text-to-speech built in and unparalleled ease of use. However the iPad brings together hardware and software accessibility in new and exciting ways.
Many disabled people do not have the strength or endurance of their healthy counterparts. For my own part, I am now so weak that holding a book and turning the pages is beyond me. Even though a copy holder made it more possible, the clumsiness of manipulating the book made it a real effort. But this morning I finished a free electronic copy of “The Three Musketeers” on the iPad. The only effort required is to tap the screen. Although it is customary to use the fingers, a user in America whose finger tips turn inward says she uses a third party stylus to use the iPad. Either way, the iPad is a liberating device for people who cannot do ordinary everyday tasks because of physical disability.
Of course, the iPad is lighter than many books, especially the large print versions that I seem to need nowadays. While you cannot zoom in on the iBook pages, there are two text sizes and I found I could read the larger one without glasses. It is also lighter than the calendar we are issued with at college and here is my real reason for buying the iPad – the Calendar app. It took me a bit to learn how to use it – it was so simple that I overlooked obvious touch points while looking for obscure items like menus which previous software taught me to use. However, once you free your mind and take a few stabs at the screen, things move and you learn some of the simplicity itself that makes up the software.
Another great thing for disabled people is that once you have managed to purchase the iPad so much of the really fun stuff is free. The iBooks mentioned above, thousands of books ready to download. Games, utilities, lectures from iTunes University which cover the gamut of human expression and experience – all this freely available. Adobe has a lovely little free app that allows drawing in fine detail if required. There is no need to connect to another computer and downloading and installing apps is simplicity itself. It brings so much of the outside world, which can be difficult for a disabled person to navigate, right into their reach.
Disabled children are particularly advantaged with an iPad. Many must spend long hours in bed, where other amusements such as TV do not satisfy and games just take too much effort. The iPad allows complex games such as Sudoku ($2.49) to be played with a minimum of effort. Harbour Master is a free download but I find it takes too much energy. Removem 2 is fairly challenging but doesn’t take too much effort. For the very young, “The Cat in the Hat” ($3.99) is a delightful example of reading development possible with the iPad. I hope that there are many such apps created. There are parental locks available so as to make the iPad safe for small children to use. Alternatively, you could just switch off the wireless connection.
One of the criticisms of the iPad is that its screen is too bright to be an eReader. As soon as I purchased my iPad I also bought an anti-glare screen cover and a molded rubber case for it. I drop things and spill things and splash things so I took immediate precautions to protect the iPad from my life. (It’s been 10 days and I haven’t dropped it yet!). The iPad also has a brightness setting which I immediately scrolled down to the lowest setting. Having taken these precautions, the iPad’s brightness has not been a problem.
The initial cost of the iPad is high – mine was $759 plus $60 for the covers mentioned above. Also it is not very useful without an internet connection, because although many things are free, they must be downloaded. That said, it still is an amazing and magical tool for those of us who are limited in our ability to interact with the world.
Saturday, May 29, 2010
I got an iPad!!!
Am trying to write this post on the iPAd but it doesn't not seem to want to recognize the text area. Sigh. Yes I love the iPad but sometimes... I needed something that wasn't too heavy to carry which I could rapidly make notes on. Once I heard that the iPad boots instantly I was sold.
My daughter rang the apple shop downtown in Civic and was told they had a waiting list of fifty. No hope. On the Wednesday it occurred to me that there was another Mac shop in town - the one at ANU. Got there at about 20 to 9 and was first in line in my wheelchair. Got a 32gig wi-fi -cannot justify the extra money for a 3G as I do not go out that much. Am very happy, though there is a lot to get used to. Have not owned a Mac in years. Keyboard is nice. Am typing at about 20 words a minute.
My daughter rang the apple shop downtown in Civic and was told they had a waiting list of fifty. No hope. On the Wednesday it occurred to me that there was another Mac shop in town - the one at ANU. Got there at about 20 to 9 and was first in line in my wheelchair. Got a 32gig wi-fi -cannot justify the extra money for a 3G as I do not go out that much. Am very happy, though there is a lot to get used to. Have not owned a Mac in years. Keyboard is nice. Am typing at about 20 words a minute.
Monday, May 17, 2010
ME Awaremess Day May 12th 2010
Below is the email I sent to my colleagues on the May 12th 2010.
Hi All,
These are the symptoms as I experience them.
1. Fatigue: -that substantially reduces activity level – I am at somewhere between 30-40% of what I used to do.
2. Post-Exertional Malaise and/or Fatigue: I have a limited amount of energy to spend each day at school. For example I try not to go up and down stairs more than 3 times a day. If I do more than that I will have less energy to spend on teaching.
3. Sleep Dysfunction: I used to sleep like a log. Now if I do sleep all the way through a night it is like WOW I SLEPT!!
4. Pain: I am in pain all of the time. My legs ache as though I had run up Mt Ainslie or something. Sometimes the students bump my chair and I hurt all over from the impact. I only take painkillers when the headaches are bad enough to distract me in class.
5. Neurological/Cognitive Manifestations: I have a bit of photophobia – sensitivity to light, also sensitivity to taste etc.
6. At Least One Symptom from Two of the Following Categories:
a. Autonomic Manifestations: This is what you mostly see “Chronic Orthostatic Intolerance” – inability to be upright for long basically because my heart doesn’t adjust when I am upright and the blood pools in my feet. When I lie down my heart rate increases and then I am o.k. again.
b. Neuroendocrine Manifestations: loss of thermostatic stability – this drives me crazy – burning hot feet in the middle of winter so I have to get icepacks in the middle of the night to cool my feet
c. Immune Manifestations: recurrent sore throat, recurrent flulike symptoms – so I wear a scarf almost all the time, day and night, in the cooler months.
7. The illness persists for at least six months: I have been sick for almost 18 months.
I want to thank this college and my colleagues for always treating me with respect as I have staggered through the last 18 months. So many sufferers meet with doubt and cries of ‘It’s all psychological – pull yourself together!’ Just because it is incurable, chronic and has so many really weird symptoms doesn’t mean it should be treated as if it is made up. Those who knew me before I got ill, and know what a battle my life has become, know that this is not something one does for kicks.
Prognosis
One of the funny comments you hear about this illness is: People keep on saying I look so well, when I feel so ill! Lots of sufferers write about that. As I told the doc in Jan “I am extraordinary well, apart from this debilitating illness”. There is no cure, there is a 5% chance of a ‘spontaneous recovery’, 40-60% chance I will get somewhat better, 40-60% chance I will get somewhat worse and may go into decline, 5% chance I will die of organ failure or be totally bedbound. Oh, and all of the symptoms above can randomly get better or worse at any time. I generally feel worse in the morning and better as the day goes on. But not always. Such a crazy thing to be beholden to!
You are probably wondering why I bother coming to school considering everything. Well, it relieves the boredom (insert smiley here) and I feel I have something worthwhile to contribute to the students I teach and the staff and parents I interact with. Also I feel I am so very fortunate. I have nothing to do but teach – my husband does the housework etc. The target age group for this illness is 25-40 – so many young people just starting out or mums with young children. It must be so hard for them.
Please understand I am not saying that this illness is worse than others because I know I am not special. I know many of you carry extraordinary burdens in your health and family situations. However, I wasn’t sure that many of you would know much about my illness so thought I would take a moment to make you aware of it during this awareness week.
Regards and thanks for taking the time to read this,
Jessica Harvey
IT Department
Erindale College
McBryde Cres
WANNIASSA ACT 2903
Hi All,
It is ME/CFS awareness week soon and since I have this illness I thought I would do my bit to increase awareness of it. In Australia, ME/CFS has a higher incidence that breast cancer or lung cancer. However it is largely a hidden illness as many people are bed bound or too weak to do anything more than survive. So this email is my effort to increase your awareness of the illness.
Awareness
A good guide to the illness is found at
http://www.mefmaction.net/documents/me_overview.pdfDefinition
ME/CFS is an acquired organic, pathophysiological, multi-systemic illness that occurs in both sporadic and epidemic forms. Myalgic Encephalomyelitis (ICD 10 G93.3), which includes CFS, is classified as a neurological disease in the World Health Organization’s International Classification of Diseases (ICD). Chronic fatigue must not be confused with ME/CFS because the “fatigue” of ME/CFS represents pathophysiological exhaustion and is only one of many symptoms. Compelling research evidence of physiological and biochemical abnormalities identifies ME/CFS as a distinct, biological, clinical disorder.
Symptoms
These are the symptoms as I experience them.
1. Fatigue: -that substantially reduces activity level – I am at somewhere between 30-40% of what I used to do.
2. Post-Exertional Malaise and/or Fatigue: I have a limited amount of energy to spend each day at school. For example I try not to go up and down stairs more than 3 times a day. If I do more than that I will have less energy to spend on teaching.
3. Sleep Dysfunction: I used to sleep like a log. Now if I do sleep all the way through a night it is like WOW I SLEPT!!
4. Pain: I am in pain all of the time. My legs ache as though I had run up Mt Ainslie or something. Sometimes the students bump my chair and I hurt all over from the impact. I only take painkillers when the headaches are bad enough to distract me in class.
5. Neurological/Cognitive Manifestations: I have a bit of photophobia – sensitivity to light, also sensitivity to taste etc.
6. At Least One Symptom from Two of the Following Categories:
a. Autonomic Manifestations: This is what you mostly see “Chronic Orthostatic Intolerance” – inability to be upright for long basically because my heart doesn’t adjust when I am upright and the blood pools in my feet. When I lie down my heart rate increases and then I am o.k. again.
b. Neuroendocrine Manifestations: loss of thermostatic stability – this drives me crazy – burning hot feet in the middle of winter so I have to get icepacks in the middle of the night to cool my feet
c. Immune Manifestations: recurrent sore throat, recurrent flulike symptoms – so I wear a scarf almost all the time, day and night, in the cooler months.
7. The illness persists for at least six months: I have been sick for almost 18 months.
I want to thank this college and my colleagues for always treating me with respect as I have staggered through the last 18 months. So many sufferers meet with doubt and cries of ‘It’s all psychological – pull yourself together!’ Just because it is incurable, chronic and has so many really weird symptoms doesn’t mean it should be treated as if it is made up. Those who knew me before I got ill, and know what a battle my life has become, know that this is not something one does for kicks.
Prognosis
One of the funny comments you hear about this illness is: People keep on saying I look so well, when I feel so ill! Lots of sufferers write about that. As I told the doc in Jan “I am extraordinary well, apart from this debilitating illness”. There is no cure, there is a 5% chance of a ‘spontaneous recovery’, 40-60% chance I will get somewhat better, 40-60% chance I will get somewhat worse and may go into decline, 5% chance I will die of organ failure or be totally bedbound. Oh, and all of the symptoms above can randomly get better or worse at any time. I generally feel worse in the morning and better as the day goes on. But not always. Such a crazy thing to be beholden to!
You are probably wondering why I bother coming to school considering everything. Well, it relieves the boredom (insert smiley here) and I feel I have something worthwhile to contribute to the students I teach and the staff and parents I interact with. Also I feel I am so very fortunate. I have nothing to do but teach – my husband does the housework etc. The target age group for this illness is 25-40 – so many young people just starting out or mums with young children. It must be so hard for them.
Please understand I am not saying that this illness is worse than others because I know I am not special. I know many of you carry extraordinary burdens in your health and family situations. However, I wasn’t sure that many of you would know much about my illness so thought I would take a moment to make you aware of it during this awareness week.
Regards and thanks for taking the time to read this,
Jessica Harvey
IT Department
Erindale College
McBryde Cres
WANNIASSA ACT 2903
Sunday, April 25, 2010
Great Recovery then Crash
I was wondering how I would cope going back to school but things were going really well. In fact, I started feeling really well. I actually ran a short distance. Each day was amazing. So what did I do? I over did it.
Coming into Easter I crashed. Really badly. I chart my energy levels each day. My usual is 3 out of 10. I was hitting 6-7 out of 10 and beginning to think of handing back my medical sticker for the car parking as I thought I was getting better. I am trying not to be bitter now. I wasted that beautiful recovery by working sooo hard. Now I am constantly exhausted. I am dreading going back to school. My energy level on a good day is back up to 3. On a bad day, of which I have had several in the last two weeks, it is about a 1. Lying on the lounge hurts too much and I have to go back to my bed where we have a latex topper which is so much more comfortable.
Lots of bad experiences lately. Have asked the doc for a brain SPECT exam. Don't know if he will say yes.
Have lots of work to do so had better get on with it. Am determined to post at least once a month. Maybe it will help me remember who I am and what I have and what I must do - I must live a disciplined life.
Oh, found a couple of good blogs at http://livingwithchronicfatiguesyndrome.wordpress.com/
and
http://livewithcfs.blogspot.com/
Coming into Easter I crashed. Really badly. I chart my energy levels each day. My usual is 3 out of 10. I was hitting 6-7 out of 10 and beginning to think of handing back my medical sticker for the car parking as I thought I was getting better. I am trying not to be bitter now. I wasted that beautiful recovery by working sooo hard. Now I am constantly exhausted. I am dreading going back to school. My energy level on a good day is back up to 3. On a bad day, of which I have had several in the last two weeks, it is about a 1. Lying on the lounge hurts too much and I have to go back to my bed where we have a latex topper which is so much more comfortable.
Lots of bad experiences lately. Have asked the doc for a brain SPECT exam. Don't know if he will say yes.
Have lots of work to do so had better get on with it. Am determined to post at least once a month. Maybe it will help me remember who I am and what I have and what I must do - I must live a disciplined life.
Oh, found a couple of good blogs at http://livingwithchronicfatiguesyndrome.wordpress.com/
and
http://livewithcfs.blogspot.com/
Monday, February 15, 2010
Hero
Just saw Janine Shepherd on TV on Talking Heads on the ABC. In my former life, she was one of my heros. She has had so much to deal with. So much difficulty and she has overcome so much.
I am back at work. Yes there was a break known as a holiday. I spent a lot of it unwell. Don't know particularly why. There were lots of great days but I think I am now sensitive to heat. Tonight seeing Janine actually had a strange effect. I feel so angry. She is such a great person but she could do something about what was wrong. She has done so great. But what can I do? I struggle and I work and feel like I live in some strange limbo. The funny thing is she ended with something that I really believe - being grateful.
If only I could fight to get better I would. All I can do be careful. Be disciplined - and be grateful.
Later: Have just been reading some of the horrendous advice handed out on medical websites for ME or CFS as some people persist in calling it. Am so grateful in my heart that my doctor was so kind and so understanding when he told me I had PVFS post viral fatigue syndrome. He has never made me feel I should exercise and I feel so angry when I see advice like on this kids health site.
Keep as active as possible??? NO NO NO. That is what Kay Gilderdale was told to do for her daughter - she made her exercise until she could walk no more... it was reading Lynn story of her early illness that made me much more accepting the limits I have.
So much to be grateful for - I have husband, children and grandchildren. All loving and kind. What more can I ask for?
I am back at work. Yes there was a break known as a holiday. I spent a lot of it unwell. Don't know particularly why. There were lots of great days but I think I am now sensitive to heat. Tonight seeing Janine actually had a strange effect. I feel so angry. She is such a great person but she could do something about what was wrong. She has done so great. But what can I do? I struggle and I work and feel like I live in some strange limbo. The funny thing is she ended with something that I really believe - being grateful.
If only I could fight to get better I would. All I can do be careful. Be disciplined - and be grateful.
Later: Have just been reading some of the horrendous advice handed out on medical websites for ME or CFS as some people persist in calling it. Am so grateful in my heart that my doctor was so kind and so understanding when he told me I had PVFS post viral fatigue syndrome. He has never made me feel I should exercise and I feel so angry when I see advice like on this kids health site.
Keep as active as possible??? NO NO NO. That is what Kay Gilderdale was told to do for her daughter - she made her exercise until she could walk no more... it was reading Lynn story of her early illness that made me much more accepting the limits I have.
So much to be grateful for - I have husband, children and grandchildren. All loving and kind. What more can I ask for?
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