I do not have a regular photo post for you this week but this morning I stumbled upon a webpage with 20 excellent quotes regarding disability. So many things well said and so accurate, regardless of the generation that they were said in. Ponder it, quit admiring or looking up to individuals with a disability because of that disability, and let your mind think on these for a time.
"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."
- Neil Marcus
“Concentrate on things your disability doesn't prevent you doing well, and don't regret the things it interferes with. Don't be disabled in spirit as well as physically.”
- Stephen Hawking
“Disability is a matter of perception. If you can do just one thing well, you're needed by someone.”
- Martina Navratilova
"Each handicap is like a hurdle in a steeplechase, and when you ride up to it, if you throw your heart over, the horse will go along, too."
- Lawrence Bixby
"Let’s stop "tolerating" or "accepting" difference, as if we’re so much better for not being different in the first place. Instead, let’s celebrate difference, because in this world it takes a lot of guts to be different."
- Kate Bornstein
“No disability or dictionary out there, is capable of clearly defining who we are as a person.”
- Robert M Hensel
“Society's accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment.”
- William J. Brennan, Jr.
I'm not an advocate for disability issues. Human issues are what interest me. You can't possibly speak for a diverse group of people.”
- Aimee Mullins
“I haven't met anyone yet who isn't handicapped in some way. So what's the big deal? Don't hide your deformity. Wear it like a Purple Heart."
- Georgiann Baldino
“Try not to associate bodily defect with mental, my good friend, except for a solid reason”
- Charles Dickens, David Copperfield
“I am conscious of a soul-sense that lifts me above the narrow, cramping circumstances of my life. My physical limitations are forgotten- my world lies upward, the length and the breadth and the sweep of the heavens are mine!”
- Helen Keller
“I choose not to place "DIS", in my ability."
- Robert M. Hensel
"Some people are always grumbling because roses have thorns; I am thankful that thorns have roses."
- Alphonse Karr
“The only disability in life is a bad attitude.”
- Scott Hamilton
“A troubled life beats having no life at all”
- Richard M. Cohen
“When you focus on someone's disability you'll overlook their abilities, beauty and uniqueness. Once you learn to accept and love them for who they are, you subconsciously learn to love yourself unconditionally.”
- Yvonne Pierre
“The world has a fast-growing problematic disability, which forges bonds in families, causes people to communicate in direct and clear ways, cuts down meaningless social interaction, pushes people to the limit with learning about themselves, whilst making them work together to make a better world. It’s called Autism – and I can’t see anything wrong with it, can you? Boy I’m glad I also have this disability!”
- Patrick Jasper Lee
“Chances are, disabled or not, you don’t grow all of your food. Chances are, you didn’t build the car, bike, wheelchair, subway, shoes, or bus that transports you. Chances are you didn’t construct your home. Chances are you didn’t sew your clothing (or make the fabric and thread used to sew it). The difference between the needs that many disabled people have and the needs of people who are not labelled as disabled is that non-disabled people have had their dependencies normalized.”
- AJ Withers
"When you have a disability, knowing that you are not defined by it is the sweetest feeling."
- Anne Wafula Strike
If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place."
- Susan Wendell
The authenticity of these has not been verified, whether the attributed speaker is accurate or not, these are still worth considering.
Showing posts with label writings. Show all posts
Showing posts with label writings. Show all posts
Monday, December 1, 2014
Wednesday, April 2, 2014
Parking Woes Reversed
The above quote was from the original post. While I would love to see a less aggressive campaign, we all know it doesn't work and I commend the bravery of those who helped make this happen. One of the top-rated comments on the post on Facebook identify the fact that many people with disabilities do not use wheelchairs. Fair enough. But I think this would be the easiest way to get the point across. Maybe a cane or a walker or a crutch or other assistive mobility device would have also helped to make the point.
Regardless, I hope that a few people realized how critical the spots can be to us, even when you are just running in to grab a coffee.
Thanks for the tip, Desiree!
Thursday, March 6, 2014
Your Ambitions Are Great
What you do, and what satisfies you, is enough. You do not need to be an athlete with a disability or to be in the spotlight to be a good, hard working, productive, happy person who is worthy of affirmation and appreciation.
The praise of men and memories of the glory days will not provide lasting satisfaction. Find who and what gives you meaningful purpose now, and focus on that.
Thursday, November 14, 2013
In the Pivacy of Your Own Home
Recently I spoke about the essential technology required for paraplegics, quadriplegics and others with neurological disabilities. The non-exhaustive list included catheters, pant hooks, leg bags, exam gloves, lubricant, and suppositories and enemas. There are enough intimidating words in that list to make anyone cringe but it is all necessary for health and even survival.
Pain is nothing new to someone with a disability and the pain involved in using the above technologies is, for the most part, controllable by the person using that technology. It is fair enough to say that some people may have trouble ripping off their own Band-Aid, popping a pimple or other unpleasant task one does for themselves. But, usually if something needs to be done a person just simply learns how to do it. The same can be said for these technologies and procedures.
Where the problem really begins is when the pain is not controlled by the disabled individual. My statement still stands true, that the pain is mostly controllable by the person using the technology, but with limitations in dexterity, movement, and strength it often is used by someone other than the person in need of its benefits. It is the caregiver who is now in the majority of control of that person's experienced pain. Though they just want to get the job done, and to help the person that is in need, the caregiver still must have the understanding that what needs doing must be done, regardless of the discomfort it may cause.
A good caregiver understands the balance point between inflicting pain and completing the task at hand as very often the intensity with which a job is done coincides with the time it takes to complete it. While in rehabilitation it was frequently requested of me that I'd be a guinea pig for students working on their practicum. Most often that involved being a practice subject for student nurses to learn to catheterize. For the most part this was alright with me with the exception of one female student nurse.
Almost all of them had a hesitancy which prolonged the discomfort until the catheter would actually enter the bladder, and the worst of it would be over, but this one student's shyness caused her to have a very difficult time getting a firm hold of me and of the catheter. While she was struggling I was in discomfort both from having a full bladder and from the rubbing of the catheter on the sphincter of that full bladder. I attempted to ease the tension of the moment with a comment meant to both jokingly put her at ease and convey importance of getting the job done. It was not received as well as I had hoped.
The point is that she had yet to reach the stage of confidence and urgency needed to complete the task efficiently without causing unnecessary prolonged discomfort. As well, I had yet to find the best way to lighten the situation without causing harm to the necessary border between professionalism and familiarity.
So, how does a disabled individual deal with the fact that someone else is performing such procedures to their body such as insertion of foreign objects into out orifices? Some, I know, are grateful to have the support of their significant other or parent and thankful that the number of people involved in their most private activities are limited to very few. Depending on the couple or family, this can be a strain on the relationship. For a couple, nothing says romantic like a medical procedure before bed, though some might argue it strengthens their relationship. As for children with a disability, growing into teenagers and processing adolescence, privacy desires are a concern. There is also the question of what to do if the caregiver becomes too ill to perform those duties or is unavailable for some unforeseen reason.
The alternative is to have the care provided by someone else or some other organization. Some of the consequences of that include a set of caregivers with built-in backups but rotating staff, both scheduled due to shift rotations and unscheduled due to staff changing positions, quitting or new staff being hired. Just as one employee becomes familiar with your body and its current behavior their shifts are over and they begin days off while someone else comes on. Then, the new person needs to be briefed on the situation and adapt their care based on how things have been going, recently. Of course, some caregivers are more skilled than others and, unfortunately just like when I was in rehabilitation, you can often determine how good of the day you will have based on who is working because there is a great likelihood how good or bad you will feel by the job they do. This is not the way it should be, like it or not. We're dealing with people who are dealing with people. People with good days and bad days, varying personalities, and different preferences of doing things, and of how things are done to them.
Regardless of a person's choice of caregiving structure, it still comes down to the processes of catheterization, digital stimulation (search the Internet for that if you wish to know more about the process of bowel care because I certainly won't be photographing that to post on Challenging Reality) and other privacy invasions occurring in your own home in order to maintain health and survive. Have I mentioned that requiring the use of the wheelchair is not our biggest problem?
While the routine is at first stressful, modesty erodes and it becomes normal. Occasionally, during difficult bouts from sickness or other irregular health fluctuations, the physical pain increases for a time while the mental strain grows right alongside it. The result is productivity and motivation decreasing in tandem with perceived usefulness and optimism for at best a return to how things were before the bout of diminished health.
In The Simpsons episode "Homer the Smithers", Homer fills in for as Mr. Burns' assistant, Mr. Smithers, while he was away on vacation. Homer's ineptness forces Burns to fend for himself. By the end of the episode Burns has learned his lesson and says, "Being waited on hand and foot is okay for your average Joe, but it's not for me."
With the life of automation and ease that most of us seek, I ask you to take a minute now to be grateful for the things that you can do for yourself. Do not take for granted the ability to wash dishes, mow the lawn, shovel snow, pump your own gas or take only 5 minutes to independently use the washroom, in the privacy of your own home.
Pain is nothing new to someone with a disability and the pain involved in using the above technologies is, for the most part, controllable by the person using that technology. It is fair enough to say that some people may have trouble ripping off their own Band-Aid, popping a pimple or other unpleasant task one does for themselves. But, usually if something needs to be done a person just simply learns how to do it. The same can be said for these technologies and procedures.
Where the problem really begins is when the pain is not controlled by the disabled individual. My statement still stands true, that the pain is mostly controllable by the person using the technology, but with limitations in dexterity, movement, and strength it often is used by someone other than the person in need of its benefits. It is the caregiver who is now in the majority of control of that person's experienced pain. Though they just want to get the job done, and to help the person that is in need, the caregiver still must have the understanding that what needs doing must be done, regardless of the discomfort it may cause.
A good caregiver understands the balance point between inflicting pain and completing the task at hand as very often the intensity with which a job is done coincides with the time it takes to complete it. While in rehabilitation it was frequently requested of me that I'd be a guinea pig for students working on their practicum. Most often that involved being a practice subject for student nurses to learn to catheterize. For the most part this was alright with me with the exception of one female student nurse.
Almost all of them had a hesitancy which prolonged the discomfort until the catheter would actually enter the bladder, and the worst of it would be over, but this one student's shyness caused her to have a very difficult time getting a firm hold of me and of the catheter. While she was struggling I was in discomfort both from having a full bladder and from the rubbing of the catheter on the sphincter of that full bladder. I attempted to ease the tension of the moment with a comment meant to both jokingly put her at ease and convey importance of getting the job done. It was not received as well as I had hoped.
The point is that she had yet to reach the stage of confidence and urgency needed to complete the task efficiently without causing unnecessary prolonged discomfort. As well, I had yet to find the best way to lighten the situation without causing harm to the necessary border between professionalism and familiarity.
So, how does a disabled individual deal with the fact that someone else is performing such procedures to their body such as insertion of foreign objects into out orifices? Some, I know, are grateful to have the support of their significant other or parent and thankful that the number of people involved in their most private activities are limited to very few. Depending on the couple or family, this can be a strain on the relationship. For a couple, nothing says romantic like a medical procedure before bed, though some might argue it strengthens their relationship. As for children with a disability, growing into teenagers and processing adolescence, privacy desires are a concern. There is also the question of what to do if the caregiver becomes too ill to perform those duties or is unavailable for some unforeseen reason.
The alternative is to have the care provided by someone else or some other organization. Some of the consequences of that include a set of caregivers with built-in backups but rotating staff, both scheduled due to shift rotations and unscheduled due to staff changing positions, quitting or new staff being hired. Just as one employee becomes familiar with your body and its current behavior their shifts are over and they begin days off while someone else comes on. Then, the new person needs to be briefed on the situation and adapt their care based on how things have been going, recently. Of course, some caregivers are more skilled than others and, unfortunately just like when I was in rehabilitation, you can often determine how good of the day you will have based on who is working because there is a great likelihood how good or bad you will feel by the job they do. This is not the way it should be, like it or not. We're dealing with people who are dealing with people. People with good days and bad days, varying personalities, and different preferences of doing things, and of how things are done to them.
Regardless of a person's choice of caregiving structure, it still comes down to the processes of catheterization, digital stimulation (search the Internet for that if you wish to know more about the process of bowel care because I certainly won't be photographing that to post on Challenging Reality) and other privacy invasions occurring in your own home in order to maintain health and survive. Have I mentioned that requiring the use of the wheelchair is not our biggest problem?
While the routine is at first stressful, modesty erodes and it becomes normal. Occasionally, during difficult bouts from sickness or other irregular health fluctuations, the physical pain increases for a time while the mental strain grows right alongside it. The result is productivity and motivation decreasing in tandem with perceived usefulness and optimism for at best a return to how things were before the bout of diminished health.
In The Simpsons episode "Homer the Smithers", Homer fills in for as Mr. Burns' assistant, Mr. Smithers, while he was away on vacation. Homer's ineptness forces Burns to fend for himself. By the end of the episode Burns has learned his lesson and says, "Being waited on hand and foot is okay for your average Joe, but it's not for me."
With the life of automation and ease that most of us seek, I ask you to take a minute now to be grateful for the things that you can do for yourself. Do not take for granted the ability to wash dishes, mow the lawn, shovel snow, pump your own gas or take only 5 minutes to independently use the washroom, in the privacy of your own home.
Monday, October 7, 2013
Rachel Friedman - "We Want a Cure"
I was just made aware of this article on the Huffington Post.
http://www.huffingtonpost.com/2013/10/04/racrachelle-friedmanhelle-friedman_n_4044820.html
Rachel Friedman, a C6 quadriplegic of three years, writes very truthfully about the realities of life with a spinal cord injury. The perceived non-urgency of the situation by the able-bodied public, the lack of understanding of what we face (hopefully partially revealed on this website), the unseen struggles and the unrecorded costs are only a very few of the issues that make many of our lives very difficult many days.
Thankfully, in Canada, we do not pay for our urgent healthcare, but for care such as home care provided by home health aides it is merely subsidized but still an out-of-pocket expense. Ironically, those that require higher care by registered nurses it is completely covered, but we won't get into the way many home care RNs treat you as a job to be done and not a person with a life to live by showing up whenever they feel like it, affected your ability to actually live a life for fear of missing your care for the day.
I have already spoken about the misconceptions of our only problem being that we cannot walk, but as she said, the constant pain many of us have, the aches, the lack of quality sleep, the greatly diminished life expectancy, all of these things should be given a higher priority than they are. Unfortunately, most healthcare systems can only react to emergencies. Preventative medicine is a rare thing and unless you are dealing with one of those severe infections, don't expect to receive full and quality regular observation without a great deal of personal advocacy for your own healthcare.
Usable exam tables, ultrasound stretchers of the height that's safe to transfer onto, even just access to a scale to monitor your weight, all of these are luxuries that should not be considered luxuries.
For reasons like this I ask that you take the few seconds to share this article and this website with people. It would mean a lot more to myself, and my peers, then the chuckle you will get from one more Internet joke or level of Candy Crush before bed tonight.
Thank you.
http://www.huffingtonpost.com/2013/10/04/racrachelle-friedmanhelle-friedman_n_4044820.html
Rachel Friedman, a C6 quadriplegic of three years, writes very truthfully about the realities of life with a spinal cord injury. The perceived non-urgency of the situation by the able-bodied public, the lack of understanding of what we face (hopefully partially revealed on this website), the unseen struggles and the unrecorded costs are only a very few of the issues that make many of our lives very difficult many days.
Thankfully, in Canada, we do not pay for our urgent healthcare, but for care such as home care provided by home health aides it is merely subsidized but still an out-of-pocket expense. Ironically, those that require higher care by registered nurses it is completely covered, but we won't get into the way many home care RNs treat you as a job to be done and not a person with a life to live by showing up whenever they feel like it, affected your ability to actually live a life for fear of missing your care for the day.
I have already spoken about the misconceptions of our only problem being that we cannot walk, but as she said, the constant pain many of us have, the aches, the lack of quality sleep, the greatly diminished life expectancy, all of these things should be given a higher priority than they are. Unfortunately, most healthcare systems can only react to emergencies. Preventative medicine is a rare thing and unless you are dealing with one of those severe infections, don't expect to receive full and quality regular observation without a great deal of personal advocacy for your own healthcare.
Usable exam tables, ultrasound stretchers of the height that's safe to transfer onto, even just access to a scale to monitor your weight, all of these are luxuries that should not be considered luxuries.
For reasons like this I ask that you take the few seconds to share this article and this website with people. It would mean a lot more to myself, and my peers, then the chuckle you will get from one more Internet joke or level of Candy Crush before bed tonight.
Thank you.
Tuesday, May 28, 2013
Back on the Water - Sit Skiing
I miss water skiing sometimes. Not just normal skiing, but sit skiing, too. I may be able to scrounge up some photos and videos from the sit ski my dad made for me. I've never used a factory made one designed for more aggressive skiing, but dad's build was great.
Unfortunately, the infrequency of using it and hassle of going for a run made me veer away from it. I can be like that; I like to focus my attention and efforts on things 100%. When I cannot because of seasonal interruptions or other factors I have trouble finding value in continuing with an activity.
Certainly photography has it's seasons for certain types of shooting, in Saskatchewan, anyway, but there is always something to photograph. Sit skiing and target shooting are my two best personal examples of activities I love, but have seasons they cannot be done in.
With that, I leave you with a video I just learned of of a relatively new quad working on her sit skiing. It's fairly lengthy so you may want to skip the the more interesting parts, but neat, nonetheless. Youtube has many more if you want to learn more.
Unfortunately, the infrequency of using it and hassle of going for a run made me veer away from it. I can be like that; I like to focus my attention and efforts on things 100%. When I cannot because of seasonal interruptions or other factors I have trouble finding value in continuing with an activity.
Certainly photography has it's seasons for certain types of shooting, in Saskatchewan, anyway, but there is always something to photograph. Sit skiing and target shooting are my two best personal examples of activities I love, but have seasons they cannot be done in.
With that, I leave you with a video I just learned of of a relatively new quad working on her sit skiing. It's fairly lengthy so you may want to skip the the more interesting parts, but neat, nonetheless. Youtube has many more if you want to learn more.
Thursday, May 9, 2013
Motivation Behind Challenging Reality
Challenging Reality came about from a variety of different contributing reasons. The earliest being the lack of information and technology available when I was first injured 15 years ago despite being in a mature rehabilitation centre with ample professionals and at least one spinal cord injury patient at all times.
I had a persistent problem with sweating while I was still in rehabilitation. None of the doctors, nurses, therapists or other specialists were able to pinpoint it. I would go outside in the subzero temperatures with just a T-shirt on and yet the sweating would continue. The only thing that would alleviate it seemed to be getting out of the wheelchair I was in and into bed.
With very little computer or Internet experience at this point, my dad searched the web based on the symptoms he was aware of to discover that it was autonomic dysreflexia. The short version being that when a person with a spinal cord injury higher than approximately T6 is in pain, but cannot feel it, there is a response in the autonomic nervous system because the pain signal cannot reach the brain and be interpreted normally. This results in a rapid increase in blood pressure which is dangerous for anyone.
It was a very relieving day when my phone rang and dad excitedly told me to get that leg strap off of my legs and search for any other sources of pain. Because the rehab department did not have a wheelchair quite wide enough for me I was in a narrower chair and wearing a strap to keep my knees together so that my hips would not rub the wheels. Wearing that strap for too long was causing the issue. As much as I had a mostly good experience in rehab it was then that I soon realized there was going to be a lot of problem-solving that would be up to me, and those closest to me, from then on. I still see this today, 15 years later. My mother was instrumental and diligent in watching for problem areas as we figured out this new life and its nuances.
It was another patient, who had returned to rehabilitation after being out for two years after a brief initial stay that resulted in little progress, that taught me how to cough strongly as quadriplegic. With paralyzed abdominal muscles expelling air with force is very difficult. It is part of the reason that many new injuries develop pneumonia while in hospital. Laying on your back for any length of time can cause buildup in anyone's lungs but it is particularly dangerous for a new injury. I demonstrated this technique to my doctors and therapists and asked that they please remember it and teach it to new patients so that they do not need to go to the same misery. Choking on your own phlegm and spending time sick in bed, when you should be working on getting stronger and getting home, is not what you are there for. To my dismay, whenever I see them again and ask them if they remember this, they do not. It will be demonstrated in a photograph some time from now.
There were significant ways that the occupational therapy department helped me both with techniques and adaptations to perform the tasks I needed to perform. However, there were times when something stronger than what can be made with plastics, fabrics and sewing machines was needed. Cue the very handy and clever fabricator that is my dad. With significant experience working with metal and wood he was, and is, able to build just about anything I need to accomplish a task. I do not take this for granted in the least. Add to that my ability to come up with a tool appropriate to complete that task and it was not long before what was once a struggle became a simple thing. I think the creativity that I grew came from dad's garage full of raw material, odds and ends to build just about anything you could come up with. His being always willing to teach me the tools and techniques and to share his experiences made all of this possible. Perhaps, with my problem-solving ability, I should have been an engineer but I do not think I would have had the wellness to complete the work load.
But that is what photography is, seeing what you want the final result look like, putting together the pieces one subject, one light and one adjustment at a time and solving problems until the actual result matches your vision. When I first started making photos it was for the fun of it. I was told I had a good eye for it so I started to read and take it more seriously. As with almost everything in my life I want it to have some greater purpose and greater value. There is nothing wrong with a bit of recreation but I do not want to spend my good days in ineffectiveness. There is capacity here to help others when I am able. Why not combine photography with that?
Because of my limitations in speed, perspective (after a while the same shooting level from a wheelchair grows very tedious) and even lung capacity to direct a person, working with people needs to be under quite specific circumstances for me to feel that I am creating the best work that I know I can. Because of this, and because of how much I enjoy working with very refined lighting, I find still life or inanimate objects more enjoyable to photograph. They cannot get excited about having their photograph made the way a person can, and that is why I still like to work with people whenever the circumstances are right, but the controlled situation levels the playing field for me when comparing my work to that of other still life photographers.
Just this past Monday my post spoke about how much easier maneuvering on a bed is when it is the ideal circumstances of our home, including the handle affixed to our headboard to help me efficiently roll to the side to get dressed more quickly.
Is much as I like to help people with my photography through photography of people, the types of photography that I prefer and the fact that the subject of this site hits home a lot more to me makes it well-suited to me. However, as with so many of the solutions that I and my dad came up with, and that he built, every spinal cord injury patient is different with each injury affecting the person differently than the next. That is why I need contributions.
The technology that I have, be it commercially produced or custom-made, is not for everyone. I need to see other people's techniques, devices, adaptations and tools so that the person in need of a solution to a problem can get ideas from more than just what I use. The person in need may have a higher level of injury and need something more complex. Or they may have a lower level of injury and not need something as elaborate, bulky or excessive as someone who has less function that they do.
So, because of that, I encourage you to tell your friends about this site and encourage them to contact me if they have something they think might really help someone else who's going through exactly what I did.
Thank you for your support and sharing with other people. Your spreading the word means a lot to me.
Jay
Subscribe to:
Posts (Atom)