Free to be me -- independently

“Why does Fredericton need a L’Arche community?”, asked Margaret and Rodney Savidge in a recent Brunswick News commentary.

A L’Arche community in Fredericton is necessary not only for those young adults and older/senior adults with intellectual disability who need care and compassion but also for those in the ‘mainstream’ living and working in the community which they share.

In the words of Jean Vanier, Founder of L’Arche,  “the story of L'Arche begins with a huge gap of injustice and pain. It is the gap between the so-called ''normal'' world and the people who have been pushed aside, put into institutions, excluded from our societies because they are weak and vulnerable. This gap is place of invitation in which we call people to respond.”

A L’Arche community fills the gap not just with a place, a home for adults with intellectual disabilities — but also it fills the gap that many among us have in our own lives. The gap of feeling and being needed, of feeling useful; of doing our part to make the community in which we live work for everyone, especially for the ‘least among us’. Bridging the gap between those who ‘can’ and those who ‘can with proper supports’ benefits everyone, and I do mean everyone. Persons with challenges are too often seen as a burden to all of us tax paying citizens by those who just don’t know.  I find it offensive. Not only that, it’s wrong thinking and has no place when speaking of the needs of persons with challenges to daily living. You or you or you could become, in a single instant, a ‘person living with challenges to daily living’. You’re not special in that regard. Are you lucky? Maybe! You could become the parent of a child who will require lifelong supports and once adult that means accomodations with regard to where he will live. Staying in the family home from cradle to grave isn’t always a realistic option.

“It’s a dream for me to live in the community,” declared 36 year old Garrett Sinclair, when recently interviewed by Brunswick News. Mr. Sinclair lives with intellectual disabilities that make realising his dream a bit more difficult than typical for a person his age. He’s gone a few decades beyond an age when young people venture out on their own, away from hearth and home and the daily Mom and Dad support. Garrett relies upon limited supports from others to ensure his independent living goes smoothly and he is safe on a daily basis. The ‘system’ has a duty to ensure that all the Garretts in our province have safe and secure lives when parental supports are no longer available or not as available as they had been for year after year after year. Parents of adults with disablity are ‘aging out’ of their ability to meet the daily challenges caring for their child requires along with maintaining their own health and wellness as they enter their senior years. They feel guilty that they just can’t do it anymore. They must not feel guilty nor made to feel guilty. What they need is help! Not in a year, two years, five years. They and their adult children with disability need help NOW!

Imagine being 70-80 year old woman of 120 pounds caring for a profoundly involved son with the mind of a toddler who weighs 240 pounds and unable to walk. Imagine you are his primary caregiver with limited in home visits from familial help or government-subsidised help. What’s going through your mind right now? Panic? Imagine living with the daily dread of wondering what happens when you can’t do it anymore. What happens to your son or daughter,  brother or sister?

When Garrett was 22,  just 16 years ago, his mother related that someone from Social Services suggested he living in a nursing home! That, my friend, is an attitude that should have gone the way of the dinosaur back in 1981, the International Year of Disabled Persons (as it was called). Actually, it’s an attitude that should have burned away decades before. 

Remember that fellow, Franklin Delano Roosevelt? He led a country in the midst of war while coping with his own wars. The wars raging within his body ravaged by polio which cost him the use of his legs and left him with life-long pain. He hid his disability from public view as best he could but documentaries and docu-dramas about his life gave us a glimpse. In his position, a disability would have raised questions. Being ‘less’ physically able didn’t make him unable. The same is true today for those of us who live with challenges to daily living and full inclusion.

What Garrett wants and what his family wants for him is not unreasonable. He’s a young man who wants to go to work, participate in things to entertain himself, have his own place with the stuff of his life around him. What person his age doesn’t want that? 

This is why Fredericton needs a L’Arche community.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, New Brunswick with her aging Australian silky terrier and a rambunctious Maltese. She can be reached at carmacrockwell@xplornet.ca via email.

Bicycling while in bed. Hmm!!

“Frail and critically ill patients need work-out, not just rest,” according to Michelle Kho in her recent Brunswick News commentary. She and I are of the same mind with regard to ‘use it or lose it’.

Sometimes, but not often, people with a limited/narrow understanding of cerebral palsy believe we who live with it, ‘suffer’ from it or are ill/sick all the time. Thankfully, the majority of us who were born with this ‘fixed’ neurological condition do quite well, having the same life expectancy as our non-disabled peers. Certainly, we have to accomodate our uniqueness and accept that not all environments are going to meet our needs. The joy of being us!

I ‘use it’ many times a day, so I don’t lose it. Whether it’s stair climbing, bending over several times a day to tie out one dog or both, getting down on my knees to get something out of a lower cupboard, I need to move.  Even executing the steps associated with preparing my evening meal provide me with a good orthopaedic and cardio-pulmonary workout. 

I need to move so that I won’t find myself fallen down due to weakened muscles, or taken down by a lung infection, a cramped leg muscle, a low back pain. Proactivity is key in my world as it’s a matter of survival. In many respects, I may well be fitter than most women my age in spite of an array of medical/health concerns. Why? Because I started early, first at the hands of parents and others, then from my late teens to date, on my own - the activities of daily living, sometimes modified to mesh with my orthopaedic limitations, have given me a quality of life I may not be enjoying had I not made the decision to just get up and go. And keep going!

As to the hospitalised/medical patient, Ms. Kho’s article speaks to the benefit of in-bed cycling — assisted by the supine  bicycle, to prepare the entire body for life after a lying down hospital stay. It doesn’t take long for limbs to deterioriate if not used, whether passively or actively. 

Even ICU patients will benefit from passive twice daily exercise - to keep the muscles toned — it’s common sense, really. The post-surgery plan should include daily exercise, whether ordered by a physician and executed by a nurse or qualified physiotherapist or by a family member who appreciates the need to keep Uncle Joe’s arms and legs moving. Gentle massage significantly contributes to recovery while percussion therapy is another mechanism that contributes to health and wellness; again, therapists could hold show and tell sessions for family members who want to do more during hospital visits with a loved one. The comatose patient or one who is in a medically induced state of unconsciousness still benefits from passive limb manipulation. There has been much written about the therapeutic value of touch.

Very often, the elderly patient hospitalised for several days to recover from hip replacement surgery may develop pneumonia, so exercises like cycling the legs or reps of gently bringing the patient from lying to sitting while still in bed do help as they strength breathing function and potentially minimise the rapidity with which some may contract hospital stay pneumonia.

People in my situation, as we age with conditions like cerebral palsy are mindful of the need to do as much as we can do to minimise the impact of flu, colds, or any other state of unwellness that compromises our independence.  I’m sure I speak for many who live a life similar to my own, moving through the day, with awkward gait and balance, having to measure every moment based on how our body feels and what we inherently know it can do. Sometimes, though, we forget that we’re not 10 years old. I know I do and I sometimes over-extend myself. Make no mistake! I pay for it!

What our government bodies tasked with providing services for seniors must consider are the needs of those aging with since birth and adult onset disabilities that affect quality of life. As example, persons with spastic quadriplegic cerebral palsy, vent dependent or not, would benefit from daily physiotherapy. Home services should be provided — even once a week, physiotherapy at the hands of a professional has many benefits; as well, that therapist can instruct the caregiver on key exercises that can done between visits — each and every day!

If, with the passage of time, those with profound disabling conditions are transitioned to nursing home care, is that environment ready for them? Thanks to various mechanisms of inclusion, the intellectually challenged, for example, were ensured a quality of life that allowed them to be ‘in’ the community. Should that come to an end, what, in the clinical setting will replace it to ensure a level of emotional and physical wellness continues as their bodies age. Much to consider.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

Cooking, canning, and cleaning, oh my!

Real generosity toward the future lies in giving all to the present. [Albert Camus]

Growing up and being educated in rural New Brunswick in the 60s and 70s, my classmates and I  enjoyed the kind of education we don’t see enough of today — inclusion without all the fuss and red tape and misguided opinions about what ‘they’ can or cannot do, should or should not do, and an awareness that learning the basics of living such as cooking, canning and cleaning were valuable tools and need to be made so again. Curricula must be developed beyond the ‘accepted’ and the ‘popular’. We who live with disabilities deserve a quality, inclusive education and however that is accomodated is up to the parents, the school systems - the Department of Education, the school board, and the classroom and other teachers who will be actively involved in guiding children with special needs through the maze of academia. 

Students with challenges to intellect, dexterity or mobility can accomplish a range of tasks, including cooking, canning and cleaning, benefiting from learning the same life skills as their non-disabled peers. I know I did! Pairing a student with challenges with a classmate who is not allows for another skillset being developed — empathy and understanding.

What’s currently being offered with regard to a physical education and a food and nutrition program is not at all adequate if the cycle of unhealthy lifestyle is to be broken. A fuller program of fitness and food and nutrition classes have a domino effect— what children will learn in those classes can be put into practice at home, if teachers encourage not only the students but parents. Both disciplines incoporate the critical components of maths, science and reading, so it reasons that enhancing and expanding these life sustaining programs has potential to reap significant benefits in the long term, and not just for the students taking the classes. A win-win!

Sadly, so many graduate from high school not knowing even the basics of meal preparation and cooking, nor are they particularly well acquainted with how to prepare a grocery list and budget the weekly or monthly allotment to food shopping. Focusing on how expensive food is as reason for not eating ‘well’,  is narrow in vision. One needs to look at the bigger picture. 

What would be the first thing that comes to mind if you were asked what to ‘do’ with a 4 pound rump roast? If I were to troll the mall and ask 20 people, aged 16 to 22, as example, how many of them like pot roast with vegetables, many with living grandparents would probably say they do. Then, if I asked them if they know how to prepare a pot roast with vegetables, it’s unlikely that many would know. That’s where ‘the system’ misse the mark. There’s no follow-through with ‘real life’ application on a consistent basis.

The Department of Healthy and Inclusive Communities has a role in changing lifestyles, from the very young to the very old. Again, I’m struck by the notion that pooling people and resources would make greater inroads into the problem of ill health, unwellness and the generalised not knowing what to do with a bag full of groceries containing almost no processed food, but real food - beef, chicken, fish, fresh veggies, eggs, milk, butter, oil. You get the idea.

In this age of technology, education of the kind that is critical to living to be healthy, wealthy and wise has lost significant ground. It’s time to reclaim it! Literacy rates are abyssmal and that is not disputed; results out there for all to see, in black and white. I contend that literacy rates, among other components of formal education, will improve if children, from the time they can stand up and walk, were more engaged in ‘real life’ skills. Learning how to prepare meals using REAL food will significantly impact the quality of life for every single family in this province. Learning about meal preparation involves reading, involves math, involves co-operation. Children must eat their meals in the home, so isn’t it logical that the adults caring for them be the teachers, encouraging co-operation to prepare meals. A recipe for pancakes, often served at breakfast, doesn’t involve a lot of reading. The ingredients list is short and they’re not terribly expensive; one can get quite a few pancakes from a single recipe. Double the recipe? Do some math. Experiment with additions. I add bananas or berries to most pancake recipes. Nutritious!! 

Imagine the joy on the faces of youngsters as they make their first batch of pancakes. Pancakes aren’t just for breakfast anymore! They substitute beautifully for bread slices in sandwich making. Planting berries and vegetables creates a lifelong learning experience that no classroom can replicate and that great outdoors environment is one where those frustrated by walls and rules can flourish. On that note, I’m off to warm up a few pancakes and smear them with home made blueberry jam!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, New Brunswick with her aging Australian silky terrier and a rambunctious Maltese. She can be reached at carmacrockwell@xplornet.ca via email.

Are our tax dollars being spent as efficiently as they could be?

Yup, I’m at it again. I’ve climbed back up on my soap box to expound upon the dire need for our province to rethink how it allocates money to various programs that are meant to benefit our citizens.

It was through a Brunswick News article that I learned about Ms. Michelle Bartlett, who sustained a traumatic brain injury consequent to a cardiac arrest days after valve surgery; one valve was replaced and another repaired. Her story of recovery will be addressed at the national brain injury conference to be held in Saint John in April — the first time for such a gathering in this province. Kudos to Ms. Bartlett for sharing her story and coming forward to speak about her experience. She’s one of many examples of beating the odds, surviving the unsurvivable and being gracious and dare I say brave enough to talk about it. Not lost on her is the need  for her voice to be heard, as she speaks for those who may longer be able to - perhaps due to an event such as she experienced. The government, those with the power to do great things for those who cannot, needs to not only take notice, they need to act. To DO!

“An estimated 160,000 Canadians sustain brain injuries,” according to conference organiser, Brain Injury Canada. Recovery can range from restoration of minimal functions where the individual is able to accomodate the most primitive of behaviours, to advancing, through extensive therapy, to accomodate a range of skills required for minimal to moderate unattended daily living. Daily living with brain injury is not easy.  Ask me!  I know!

Many among us do not fully appreciate the impact of a trauamatic injury, no matter how it happens, though there’s been a lot of press about sports-related concussions and the long-term effects of TBI. Many lives forever altered. More and more athletes who have sustained several concussions over the course of their careers are making the decision to leave their brains to medical science — being able to map what happened and what went so horribly wrong may contribute to determining courses of treatment for those whose lives and livelihoods have been turned upside down and inside out. The value of such brain studies shouldn’t be minimised or devalued with the misguided view that they’re not important. They are. In mapping the brain of a deceased sports figure whose life was essentially destroyed by TBI, the scientific community has opportunity to examine relationships to other disorders of the brain. Look at the commonalities between cerebral palsy with which I live, and Parkinson’s disease. There are many.

The government must direct resources to helping those whose brains are damaged to the point where their quality of life has been significantly diminished. I assert that the expenditure of funds to teach children about healthy food choices is painfully misguided. It’s doomed to fail by virtue of  the reality that the adults in their lives may not fully possess a commitment to make a difference where it needs to happen - in the home.

Those who have sustained a traumatic brain injury are in far more need of assistance — more access to therapy, whether in a clinical setting or at home; more access to respite for caregivers, and more access to funds to support cost of equipment and other aides required to enhance independent living. Whether a since birth injury like mine, a sports-related injury to the brain, a medical treatment related unanticipated event, or any adult-onset diseases and conditions, like Alzheimer’s, the need of the forever and always brain injured should take precedence over funding allocations to schemes to motivate people to stop bad habits.

With appropriate mechanisms in place, many persons with TBI may find gainful, sustainable employment and make their own way with minimal tax payer support. That, my friends, would be a great step forward!

We have infants, preschoolers, kindergarteners, grade schoolers, high school and university students, working poor, single parents, working single parents, all in need of some kind of government assistance. Pooling people and resources may be a way to ‘get the job done’ and as potential to save money; funds that could be diverted into other/new social programs. With regard to the brain injured or anyone who’s daily living is jeopardized by changes in how their brain is performing, I believe that exploration should be made into the viablity of developing daycare programs that include children with brain insult interacting in some way with older people and even seniors with brain deficiencies.  People need people no matter their age and we must not arbitrarily dismiss the value of nurturing relationships that we have decided can’t possibly work.  Parents of children with mobility  or other such challenge to inclusion, often stress over the fact that their child doesn’t have friends, misses out on activities, etc. Think about it. Young meets old day care programs. Hey, I wanna go there! We’ll make bread bowls!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

I'm mad as hell and I'm not going to take it anymore!

“I’m mad as hell and I’m not going to take it anymore!” declares Howard Beale, the news anchor from the 1976 film Network.

With tested patience, I make that same declaration often. Time and again, at various eating establishments, I’ve asked for, recommended and encouraged the installation of  a single  addition to improve the dining experience of the older patron, the patron with mobility disorder, the patron who uses crutches, the patron who uses a cane, the patron who uses a walker, and yes, even the patron who uses a manual wheelchair. And what, you’re asking yourselves, was I seeking?

I asked for one thing  — a grab bar (towel bar) a handle secured to the inside of a bathroom stall door. Such a small thing. Seriously, restaurant managers/owners! That one small thing would go a long way  to ensuring the safety of  your patrons. And being kept safe guarantees they are able to visit you again. Think about that! 

Management of numerous dining establishments in the Fredericton area have been asked — from the ‘greasy spoon’ to the high-end eatery. I’ve asked and asked and asked. Only one, in many years of asking, responded to my request. Yup, that’s right! Just ONE!  So — a huge THANK YOU to The Coffee Mill manager who, several years ago, not only heard me, but listened to me. No doubt along with me, countless others have been reaping the benefits of that single ‘small’ thing one manager did because she saw it as an important and necessary thing!

Recently, my usual dining companion and I visited another favourite Fredericton restaurant for a meal. I decided to visit the ladies room beforehand, and as I rolled along towards the bathroom, I was wondering if the management had, after years of being asked, finally put a bar on the door. Did I mention it’s such a small thing? Why, yes I did! And it doesn’t cost a lot! It only takes one time to fall and sustain a serious injury to totally alter how one will continue to live. Just one time! Just as I suspected — no ‘for patron safety’ bar on the inside of the stall door! Sadly, I wasn’t surprised!

I visited the restaurant while in my wheelchair though the bathroom isn’t particularly wheelchair accessible; it’s not even remotely close to being safe for someone who walks but has balance  issues. I speak with authority when I say that the bathroom in question poses a safety risk to the uprightly mobile disabled patron — paying customers.  Actually, a ‘safety’ bar should be mounted on the inside of ALL the bathroom stall doors in every public building in the city and beyond. It should be the standard, particularly given we have a significant aging population and with that comes decline in physical stamina and mobility and not all use wheelchairs.

An image of a wheelchair emblazoned on a parking space denotes that it’s for wheelchairs users. Taken further, it also affords those with other health issues that preclude walking long distances the freedom to park there. With that image of the wheelchair is the expectation that the interior of the building will be accessible. Surprisingly, there are many establishments where that is not the case, particularly in the bathrooms.

Not all users of wheelchairs are confined to them; some of us can and do walk, and can and do stand up in bathrooms designated for wheelchair users. Our inclination, upon standing, is to balance ourselves. What do we do? We reach our hands out. How wonderful it would be to be able to hang on to something while we were standing ourselves up and then sitting ourselves down again. Hmm! I wonder what would help with that task in a public washroom stall? Ohhh, by George, I think I’ve got it - a grab bar! With a bar secured to the inside of the stall door, folks like me wouldn’t have to worry about taking a header, having lost our balance. With a grab bar, we wouldn’t have to worry about the door flinging open and landing face first on a hard floor, possibly sustaining a concussion.  The black and blue tones wouldn’t look good on me, nor would it be a good look for management, especially if they could have prevented it.

Next time I visit one of my favourite eateries, perhaps I should bring a ‘safety’ bar, along with a power screw driver and invite the manager to join me for a bathroom accessibility check-up.

Or you could! Hey, that works! Ask the manager if s/he’d like to be party to such an inspired object lesson. It’s as easy as putting butter on toast!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, New Brunswick with her aging Australian silky terrier and a rambunctious Maltese. She can be reached at carmacrockwell@xplornet.ca via email.

Aging in place is the place to be

Just over 20 days into this new year and I’ve decided to carry on just as I did last year — moving forward one floppy, flat foot at a time, mindful that slow `n steady is the only way to go, taking no chances on my safety as I age in place — in the place that’s been my home since 1991. Some have said it’s bigger/more than I need but there’s method to my madness; having different spaces within my home in which to spend time contributes to emotional and mental wellness.  The den downstairs is rarely used, in the way it was when my husband was alive — there was safety in numbers. I may move my laptop down there now that I have an iPad to play with when I’m not at the desktop. My man friend, not to be confused with boyfriend, has been very generous over our time together and he enjoys gifting me with things he knows I’ll use a lot and enjoy. Can’t go wrong with technology! Or kitchen gadgets! I’m still waiting for the ‘next best thing’ to come along there. 

I readily call myself an ‘old broad’, specifically, a lopsided old broad aging with spastic diplegic cerebral palsy — independently living though I’m not home alone. I have dogs! Aging in place ensures a level of security I wouldn’t otherwise enjoy should I find myself ‘having’ to move. Home ownership, in spite of the routine maintenance and inherent costs that goes along with it, is the only way to go for someone in my position. Home ownership is an investment in me and my future.

Quite content to occupy myself with writing, my books, music, and two major addictions  —watching British crime shows and playing online scrabble, my needs today are few. Not a fan of theatres, movie streaming at home is great, providing a steady supply of entertainment with just a few keystrokes. Computer technology and I have a fabulous relationship but I do know ‘real live people’. Honest!  Interspersed with my ‘stay at home life’ are outings to the big city,  trying new eateries and prowling around the malls and other interesting shops. 

Thankful that I’m still able to walk, I take advantage of it through housework. As well, wheeling around the malls, courtesy of an antique Quickie wheelchair keeps me fit, while a fire-engine red mobility scooter allows for safely taking fresh air outside since I can no longer walk any significant distances on crutches and propeling a wheelchair for too long is exhausting. Aging in place for one such as I, with multiple disabilities which benefit from an array of assistive devices, affords a certain security not easily abandoned to life in a nursing home environment.

My current home also caters to the requirements for baking and cooking, both a necessary part of stayin’ alive! Though small, my kitchen is well organised, featuring a lot of counter top appliances which allow for considerable variety in daily meals.  Those who know me will attest to the fact that ‘she sure can put it away!”

Aging in place is the ideal because of how I’ve lived for the past 4 decades; an apartment would never suit my style and very few allow pets. What becomes of Fido with a down size?

Not surprisingly, many seniors who had no difficulty in the rambling old house where they raised a family, are finding that they’re experiencing that scary thing called the ‘fall’. One might think that falls wouldn’t be an issue in a smaller space but they are! The elderly/older person is often still functioning as though he was still bustling around the old house in familiar surroundings. What needs to happen in the new environment is for him to slow down and assess each space, especially if he uses aids like canes, crutches, or a walker.

I’m still able to undertake many daily tasks without need of a great deal of assistance. My biggest regret is that I didn’t learn how to drive; I suspect now it’s too late, particularly given my lack of finely tuned visual acuity.  I’ll just have to continue to bribe my fine friends with tasty treats as I prevail upon their generosity to transport me to places I need to go and people I need to see.

Often, seniors come face to face with the need to move on as a current housing situation no longer fits — perhaps ones declining balance, declining vision and hearing, or lapses in memory may suggest it’s time for interventions and a change of place. Seniors requiring extra supports must be party to discussions of proposed changes.

Remember, new and different can be a good thing!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

2017 has many moments yet to be discovered

“Lost time is never found again.” Benjamin Franklin’s words are just as relevant today as when he first said them.

The ‘coulda’, ‘woulda’ and  ‘shoulda’ of 2016 are gone but we’ve got another chance, with a brand spankin’ new year, to get it right. How many years got away from us, with opportunities missed? Opportunities to do it better. Do our part. Pull our weight. Help and be helped.

Some may feel their contribution would pale in comparison to that of others but how would they know if they don’t get out there and do it! Those who hang back and don’t get involved may well shine in the realm of community service and find they enjoy it as it brings to them something that was missing.

If you express your own feelings about caring and sharing, isolation and abandonment, others might decide to get involved and participate in being part of a change in your shared community, beginning within their own lives, with those near and dear and with those who are near  — the neighbour they really don’t know, the aftershool program that could use extra volunteers to help children with reading, the local hospital that is always seeking extra pairs of hands to do this or that, the community sponsored suppers that always need potato peelers and salad makers. The list of what you CAN do is endless. The list of what you SHOULD do rests with you and your conscience.

We are a province of aging citizens coupled with a declining growth rate. That being so, the need for people to serve, to assist those who are less able to meet their own daily needs, is at a critical mass. If you’re sitting home alone and are able to get out and about, DO it. Find out what’s going on  in your community and see where you might fit. Ultimately, what stops you is YOU!

For myself, giving comes in a form that is somewhat unique, due in large measure to the implications of my own life circumstances. I write. I write about what I know and I write about what I live and I may very well be a voice for many out there who are in a similar situation with regard to lack of access. Perhaps my written voice gives them the courage to finally speak up, to finally stand up and ask for help when needed.

Within the parameters of my online presence, I make myself available to assist young  parents with writing letters requesting devices and services necessary to improve the quality of life for their youngster with disability. I help parents through the maze of often confusing jargon aka gobbledy-gook when they get another denial letter from an agency they thought would help them. The ‘blue book’ needs to be rewritten to accommodate the real needs of real people. Yet again, to repeat an oft-used phrase - ‘one size does NOT fit all!’.

The gift of availability can be transmitted from one person to another, bringing a community to life, whether that community is online or in our daily, touch it, feel it, hear it lives.

One couple I’ve ‘known’ online for several years demonstrates clearly the importance and the  need for more neighbourliness. As my online friend Valerie says, “ we have always been isolated by our very ‘composition' by virtue of accommodation.  We have always been blessed with at least a couple of friends or neighbors who accepted us, but we always had to make the most effort.”

Valerie has Asperger’s Syndrome and Doug, her husband of over 20 years, is a vent dependent quadriplegic. Doug, was injured in a high school football game when he was in his teens and his been a quad for over 40 years! Imagine it! Forty plus years of not being able to do almost all the things that we so easily take for granted.

Quite frankly the fact that they have to ask for help is beyond sad and unfortunate. It’s just wrong! All around us are folks who used to ask for help but felt they were imposing and stopped asking, plodding along — sometimes to their detriment. Plodded along until the day when the old man who lives across the street from you fell off a ladder while changing the battery in his smoke alarm. One of those ‘shoulda’ moments you missed. “I shoulda gone over to ask Mr. Jones if he needed help,” you said to yourself. Now he’s in the hospital with a broken hip and has developed an infection. How long does it take to change a smoke alarm battery?

Living with disability is often not pretty; growing old is not fun. Asking for help is a tough pill but we have to swallow our pride and just DO it if we are to be safe. Will you DO your part in your community, on your street, to ensure that a neighbour in need stays safe? Perhaps that will be your next moment of 2017.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca