Showing posts with label adaptive living. Show all posts
Showing posts with label adaptive living. Show all posts

Wednesday, February 6, 2013

Adaptive Living – How to Help

What to do when a friend, spouse or employee becomes disabled

If you have a family member, friend, or employee who has experienced a permanent disability, you may feel conflicted between two opposing thoughts:
  • I want to help and encourage them.
  • I don't know how to help and encourage them, and I'm worried that I might make matters worse for them.
These feelings are understandable. Especially because, as a close friend or family member, it may be hard to find the right balance between helping and getting in the way; between tough love and insensitivity; between encouraging and badgering. Most likely, the wrong approach is taking no approach. There is risk in reaching out and offering help, but that risk is small compared to the loneliness of frustration of being in a state of total permanent disability without a support community. To help you help them, consider the following tips and guidelines.  


How to be a supportive friend or family member

Communication is key to getting on the right path as a friend or loved one. Offer your assistance and ask for what help they might need, whether that is transportation, dressing, bathing, walking, or whatever. It's best not to assume and just start helping; this may embarrass or frustrate the disabled person, who may be trying to learn how to do things on their own and thus find your attempt to assist to be unhelpful. 

However, knowing that you are willing to help can mean the world to them. One simple example of this from my own life: Shortly after my injury, I would put a shirt on, only afterward remembering that I wanted to wear it with the sleeves rolled up. With only one good hand, that meant I had to either take off the shirt and roll the sleeves in advance, or hope that there was a good friend nearby who wouldn't feel embarrassed or bothered by me asking them to roll up the sleeve I couldn't reach.

Other ways to help:
  • Talk with others who have experienced a similar physical disability. Ask their advice on do's and don’ts toward being helpful.
  • Review steps you can take to conform the home to accommodate the person's new immobility.
  • Go to AllForGood.org to find opportunities in your area where you can make a difference in the lives of others who have a permanent disability.
Most important: reach out to the disabled friend or family member regularly. After a major and debilitating injury, friends and family often flock to the recovery room at the hospital, but then disappear from their lives afterwards. Adaptive living takes time. Be available to them through the passage of time.


How to be supportive as an employer

As an employer, you are likely feeling an interest in taking action on two different levels: that of being a good mensch and that of being in legal compliance. For both of these, here are some tips:
Adaptive living
Employers can provide a support community
for employees with disabilities.
(Image from www.govcentral.monster.com)
  • Walk a mile in their shoes. Imagine yourself going through the same type of physical disablement as your employee. Consider physically and mentally walking through the experience of coming to work, approaching the workstation, taking restroom or lunch breaks, and performing the work, except doing so as this newly disabled employee. Most likely, you will immediately recognize problem areas and can take actions proactively to make the work environment more adaptive to their condition.
  • Get professional advice  If your company is large enough, there is likely a person in Human Resources whose job it is to help you make a disabled employee's work experience more productive or successful. If you are in a smaller company without that HR resource, look outside the organization for professional help. For example, if your employee is returning to work blind, contact The National Federation of the Blind (NFB), who will be more than willing to guide you in taking steps to be helpful and ADA compliant. 
  • Get online help.  Your first two stops should be ADA.gov (the U.S. Department of Justice Americans with Disabilities Act website) – and Disability.gov. The first is chock-full of information useful for employers. The second provides resources on benefits, rights, emergency preparedness, employment, technology and transportation for employers of people with disabilities.
For a 10,000-foot view of what you need to consider as an employer, take a look at this brief article regarding how to do the right thing as an employer of the disabled. You might also want to look at the US Department of Labor's webpage Disability Employment Policy Resources by Topic.

Adapting through giving

One final thought on how to help as part of adaptive living is for the person now living with a total permanent disability

Speaking as a person who has experienced a permanent disability (read more about my injury in Adaptive Living – Adjusting Mentally and Adaptive Living – Adjusting Physically), I have found that nothing puts my head, heart, and life on a healthy track faster or better than actively reaching out to others who are recovering from the trauma of a recent physical disability. The more time I spent helping others, the less time I had available to bemoan my condition.

Helping others also created a kind of accountability; after all, it's hard for me to encourage others toward successful adaptive living without feeling a responsibility to model it in my own life. That kept me on track.

How can you "reach out" – give yourself to others experiencing paralysis or other types of physical disability? The first step is to look at your own recovery; especially those things that help you succeed.

For me, that included such things as recovering my ability to keep my career plans moving forward by learning how to type one-handed (I volunteered my time with occupational therapists and physical therapists to demonstrate the technique and offer encouragement) and learning how to do household activities successfully with one hand that most people can only imagine doing with two, such as tying shoes one-handed and food preparation/cooking one-handed.

In a similar fashion, look at your adaptive living successes; they are each an opportunity to help others adapt to their own impairment. With each volunteer effort you make, you benefit as well.

Ric Moxley
Contributing Writer


Thursday, January 31, 2013

Adaptive Living – Adjusting Physically

Empowerment is the name of the game when you have experienced a total permanent disability.  You may not be able to change the fact that you are now living with a physical impairment, but you can (and must!) change the way you interact with the world to overcome, work around, or adapt to your new physical disability

Fortunately, there are myriad and amazing new technologies available to help enable the disabled.  For all the many types of physical disability, there are products on the market to make your life a little easier. Whether you are experiencing paralysis, failing eyesight, complete blindness, hearing disabilities, general immobility, or stroke-related impairments, resulting in speech or muscular disabilities, there are enabling gizmos and gadgets designed for you.
 

The internet is your friend

The Web is particularly valuable for those who need to adapt to a disability. The very fact that the products are available online and shipped directly to you is a wonderful benefit if you are experiencing problems with mobility. And the selection available online will inevitably be far superior to whatever a local store might have in stock. Of course, for some types of products, getting the right fit is critical. In those cases, do go to a local store or, more likely, you will work through your physical therapist or occupational therapist. But when a customized fit is not necessary, finding and ordering specialty items is where the Internet shines brightest.

To find an online store that specializes in products for the physically disabled, try using "products that help the disabled" in the search box of Google, Bing, or Yahoo. You will find more providers than you could ever need.  

impairments
Products for the physically disabled,
like this large print keyboard, make
it easier to live with a disability.
(Image from:
www.assistivetechnology.co.in)

While site search tools make it easy to quickly find a particular mobility product, also try browsing a site. After the injury that left me with right-arm paralysis, I found it very helpful to simply browse the products that are out there on the market. There were many mobility products that I never thought to ask about – products I wouldn't have guessed existed – but that have since proven to be essential parts of my daily life.


Here are some fascinating examples of solutions and products design to enable the disabled:
A rocker knife for people with
mobility impairments helps you
stay independent.
(image from:
http://www.abledata.com)
  • A chopping block designed for a person who has only one good hand. What makes it unique? The chopping block has guardrails on two sides, which allow you to "corner" the food you want to chop. It also has a spike sticking up in the center of the board, which allows you to skewer the food item you want to cut or chop, since you cannot use your other hand to hold the food steady.
  • A rocker knife, useful for cutting through meats with one hand. The knife's blade is curved – quarter-moon shaped, if you will – which allows you to cut the meat by rocking the knife back and forth through it.
  • Voice recognition software, such as Dragon NaturallySpeaking – which I'm using to "type" this article right now – allows you to speak words, phrases, and sentences aloud into a computer headset, and then the voice recognition software translates your spoken words into ordinary, editable text, just as if you had typed the text into your favorite software program. Anyone with hand mobility issues can benefit from voice recognition software. This technology is a good example of helping you do more than simply cope; with a reasonably powerful computer, a good quality headset, and a little practice at speaking clearly (pretend you're a newscaster, and you'll get great results), you can expect to get vocal "typing" speeds in excess of 100 words per minute and with an accuracy rate of 99.5%. That makes you virtually bionic: far more capable than the average typist!
  • The JAWS reader is a popular piece of computer hardware designed for those with blindness. It reads aloud from the computer any text from websites and computer programs to help the user navigate through software menus and websites.
Other mobility technologies include alternative computer keyboards that only require one hand, car and motorcycle adjustments that let you accelerate, change gears, and brake with your hands, and more.
 

Watch and learn

Beyond products, the Internet is a wonderful resource for learning how to adjust physically to a permanent disability. Many people with physical disabilities have posted how-to videos online, demonstrating how to function with limited mobility. For example, you can watch a demonstration of the JAWS reader, a demonstration on how to get back in the wheelchair from the floor or from tipping over the wheelchair when you have leg paralysis, how to go down a staircase in a wheelchair, how to do dog-walking from a wheelchair, how to make your home wheelchair accessible, how to get dressed with paralyzed legs, and more. You can even watch a video I created on how to tie your shoes with just one hand.  

Videos like these can help you to feel more mobile and capable, and without requiring the assistance of a physical or occupational therapist. Often the best mobility teachers are those who have a disability similar to your own.   

While nothing beats having your ability back, the fact is that you are living in a time when there is an endless array of accessibility products, accessibility laws, and accessibility online aids to help you regain your abilities.

Have you experienced an immobility and then benefited from adaptive living tools, techniques, or websites? If so, please use the comments tool below to share your experiences with us and our readers. 

Ric Moxley
Contributing Writer


Wednesday, January 30, 2013

Adaptive Living–Adjusting Mentally

How do you explain yellow to someone who has never seen colors? Likewise, how can a person truly understand what it’s like to have a significant disability if all they've known is ability? I suppose you can daydream about what it would be like to, say, have no legs or no hearing. Still, it’s a whole different animal when you experience a physical or mental event that leaves you unable to do the things you used to do. Let me tell you my story.

I was in film school, directing a short movie that I had also written. A knife throwing stunt went terribly awry, with the knife becoming embedded to the hilt in my shoulder. As a physical therapist would later tell me, "That's one hell of a shot – the thrower couldn't have done more damage if he was purposely aiming!” That single knife throw managed to sever the arm's main artery, as well as severing nearly every major nerve trunk in the brachial plexus. The damage to the artery nearly killed me (I literally lost more blood from my body than I kept), but the damage to the nerve plexus caused complete paralysis of my right arm below the shoulder. 

The neurosurgeon's prognosis was bleak – Expect permanent paralysis. Over the course of the following year, some of the nerves successfully regenerated, restoring full upper arm functionality and partial forearm functionality. However, nerve damage to the hand was permanent.

immobility
Living with a permanent disability doesn't have to stop you.
(Photographer:Scott Heavey/Getty Images from www.bloomberg.com)


Moving on after permanent disability


With a traumatic and permanent injury, it's inevitable that the injured person will go through the five stages of grief: denial, anger, bargaining, depression, and acceptance. But how quickly one passes through these stages can vary dramatically. For me, I had to go through the five stages twice. The first time – immediately after the injury – went by fairly quickly, within just a few days. There are couple of reasons why I feel I adapted quickly:
  • Several years earlier, I was in a major auto accident in which a close friend suffered a neck fracture that resulted in quadriplegia. Because of this, I had spent many hours in the years following that crash wondering how I would cope if I ever became a quadriplegic. Frankly, it was very hard to imagine coping with something so tragic. But the process of imagining somehow prepared me for my own paralysis, making it seem insignificant by comparison.
  • When the doctor told me that my stabbing accident would likely mean I would never use my arm again, I found I was able to accept that fate rather quickly by looking at what I wanted to do with my life. In truth, my career goals (writing and directing) and most of my personal interests and hobbies did not necessarily require me to have two good arms.
I experienced the grief cycle more profoundly about a year and a half after the accident. Why? About six months after the accident, I began experiencing some muscle movement in the upper arm. That got me quite excited, thinking that maybe the nerve damage would not be permanent. While the neurosurgeon said that I was lucky to regain anything at all, he cautioned me not to get overly optimistic: that nerve regeneration often fails to complete its course all the way down the arm to the fingertips, and that whatever regeneration I would experience would have to take place in the first 12 to 18 months after the accident.

He was right. About 12 months after the accident, the nerve regeneration stopped about midway through the forearm. I waited anxiously for several months, and then finally realized that some paralysis would remain forever (which it has, in spite of two or three follow-up surgeries over the years). Coming to accept the loss as permanent after a period of hope took a lot more work for me than it took to accept the original no-hope prognosis.
 

Adapting mentally to permanent loss of function

Many of us have disability stories to tell. Hopefully, yours is less dramatic than mine. But the stories are varied, sometimes being about mental or physical abilities that became inabilities; sometimes about the disability happening suddenly; sometimes about the disability developing gradually. No matter how dramatic or extreme the acquired disability is or is not, or what types of physical disability, it will always be a loss from which a person must either reach a point of acceptance or wallow forever in self-pity.

Choosing the latter course creates the most profound of disabilities. History is full of amazing stories of individuals who have overcome a disability to achieve greatness. But none of those victors achieved greatness without first coming to terms with their loss, and then moving on: Moving forward. Here are four effective ways to help you move on with living:
  1. Consider professional counseling. You may be able to surmount the mental challenges to developing a permanent disability, so I won't say that it is a mandate. But a professional counselor is almost always better prepared to help you overcome and move forward than any of your friends or family. Often, those who are closest to you are also too close to your loss, and are therefore too absorbed in their own reactions to your disability to provide you with meaningful psychological support.
  2. Find a community of support. Sometimes, nothing seems to help better than talking things out – or even just hanging out – with others who have experienced a permanent disability similar to your own. Many communities have such support community groups (a professional counselor can often steer you in the right direction to an appropriate support group for you).
  3. Connect with a "virtual" community. Even if your town does not have such a disability support group, remember that the Internet is your friend in times like this. There are countless online support groups where you can find those who understand what you are going through and can offer advice, encouragement, or a (virtual) shoulder to cry on.
  4. Give yourself a goal. Creating a "what's next" plan was perhaps the most effective way of moving forward for me.  I didn't want to be known at the USC film production school as the guy who got stabbed and nearly died. Rather, I wanted to be the guy who “got ‘er done" – who recovered and moved on so successfully that he finished his film in time for the end of semester screening. Having this what's-next goal immediately turned my focus away from my disability, giving me something positive and constructive on which to focus my energies.
immobility
Oscar Pistorius, paralympian, double amputee,
competes despite permanent disability.
((c) D Luckett/www.parasportimages.com from www.oscarppistorius.com)
In follow-up articles on adapting to total, permanent disability, we will look at other important aspects of adapting, such as adjusting physically (adaptive living) and how to be a more effective support when you are the friend, family member, or employer of someone who is dealing with a physical disability. Meanwhile, know that your physical or mental immobility issue need not limit you nearly as much as you might think it will.  Just ask the famous quadriplegic painter Joni Eareckson Tada or Oscar Pistorius, the 2012 Olympian runner who has no legs. And let's not forget President Franklin D. Roosevelt who was paralyzed from the waist down after a bout of polio, yet when on to become a United States president.

Here are some good resources that I personally found helpful in adjusting mentally to permanent disability
If you have any recommended resources you've come across on your own, please share these using the comments tool below.

Ric Moxley
Contributing Writer