A difficult pandemic year for those living with disability

2020 is coming to a close as the entire planet has been punched in the gut, struck in the heart, and beaten over the head with the reality that a pandemic has locked on to the world as we know it and tossed it around like an egg in a laundromat dryer. 

In my world, 2020 saw the passing of Mr. Digby, my faithful canine companion for 13 of his 17 years. Within weeks of his passing, Chez Rockwell welcomed  Mr. Malcolm, a Havanese who’s brought many smiles and chuckles and is a source of consternation for diva Miss Lexie, the geriatric Maltese.  Unconcerned about COVID, they’re only interested in food, snacks, toys and naps.  I, on the other hand, must be concerned about the virus and what it has done and what it can do. Pre-existing conditions compel me to be super proactive. I wish more among us would do the same.

We, like everyone, are adjusting to a new way of being, of doing. It’s been a challenge for so many, particularly those who define themselves within their ‘social butterfly’ network of friends and associates. Those days are not gone, but have undergone many changes to accommodate a daily presence our world. COVID 19 demands that we really take stock of how we will go forward. In doing that, we must respect the needs and rights of others, particularly when we’re out and about in the community’s  public spaces. Free yourself from the ‘it’s all about me’ attitude. 

I leave 2020 having received Ability New Brunswick’s Media Commitment to Community Award and have to say it was quite an honour to be acknowledged for something I’ve been doing for decades; dispensing in newspapers and magazines, words of wisdom based on my life and living as a person with disability. From 1956 to 2011, Ability NB was known as The Canadian Paraplegic Association, NB Division. I worked there in the 70s, learning a great deal about the inner mechanics of an agency that’s been serving persons with disability for decades. Over time, as the nature of their focus changed, so too, the name changed. As CPA began catering to the needs of people beyond those with spinal cord injuries, addressing the needs of young people with a range of challenges to mobility, from the very young to the very old, it reasoned that a more ‘inclusive’ name reflect what the agency does. And so was born Ability New Brunswick. It works.

‘Back in the day’, I was acquainted with several of their vocational rehabilitation counsellors who provided valuable services to clients, from young men and women looking to upgrade skills after an injury that changed their way of living from walking to wheeling to assisting people trying to find architecturally accessible housing while upgrading education to enhance employment potential. Invaluable services to expand growth of community.

COVID restrictions have significantly impacted those who already cope with the isolation that disability poses. Youngsters with disabilities that affect learning and ability to interact easily with peers feel the pain of COVID confinement.   Supports available during the school year are lost to them as they’ve become part of the home schooled with parents who aren’t always up to the challenge. All of these changes affect everyone in different ways. 

The challenge for many parents is that their youngsters simply don’t understand what is happening and why they can’t carry on as always. The same is true for seniors living in care and assisted living facilities who rely on emotional connection with family and friends as a key feature of their day. COVID has taken that away.  Their adult children struggle with how to cope with all that anxiety coming at them from several directions at once. It’s debilitating.

Mental health professionals can do only so much; it’s critical that people get on board with the reality that everyone must do their part, recognizing that just one thing, wearing a mask, will save many lives/day. Just DO it.  Children are carefree. Adults are careless. It’s time to adjust our thinking about COVID. Perhaps using the inauguration date of Joseph Biden as a target date, wear a mask til then the 20th of January 2021, paying attention to numbers of COVID cases in your area. They will go down. Don’t give the virus an opportunity to piggyback on you. Acknowledge that a piece of fabric covering your nose and mouth for a few hours a day is not a political statement designed to control you — it’s a health care initiative meant to save your life and the lives of those around you. Be a change maker so that COVID can change direction. Down, down, down!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, the boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell

Don't forget self-care, even in isolation

       “Each morning I wake up …”. Go ahead and sing, I know you want to!

For the record, I don’t put on my make-up. Haven’t done that in decades. That whole process exhausts me in just minutes. Besides, with my flawless Nivea skin, I don’t need it. But I digress.

Many among us, of a certain age, find sleep elusive and getting up in the morning a pain, figuratively and literally. I’m thankful that I do manage to get very good rests; an adjustable bed with massage that I’m able to elevate at the legs assist me in two significant ways — elevating the foot of the bed contributes to better cardiac flow and reduced fluid retention in the ankles and feet. Having the head of the bed raised a bit allows me to turn myself more efficiently. Shifting/turning while lying prone is a challenge for those of us with CP who have moderate/sufficient movement for functions of daily living but lack in other areas that require a greater range of motion. We tend to wear out joints and stress muscles more quickly because we’re over-compensating for deficits. Post-impairment syndrome is a term used to describe aging with cerebral palsy and the impact of growing old on bodies impacted by this particular neurological disorder that affects movement/ambulation.

When I was a child, I was exercised several times a day; legs were massaged morning and evening. My late father, a doctor, based on observing me and my movement disorder decided to forego the usual protocols of medications for spasticity or pain management. Growth spurts were part of all children’s experience. I would be no different. There’d be no need to ‘medicate’ it. Today, I do not medicate to manage CP.

In these times of social isolation many persons with disability are finding it challenging to  keep up with routines of self-care. Purposeful movement has been part of my daily routine my entire life. I’m of the ‘use it or lose it’ school and as I aged, I simply modified how I did things, from meal prep to house cleaning to an exercise regimen in keeping with my physical abilities as they changed with age.

One exercise that I do faithfully is  spine stretching; first thing in the morning. Folks of a certain age should never get out of bed quickly as, without warning, a dizzy spell can  crest over you and a loss of consciousness may result. It happened to my brother-in-law. Good rule of thumb — upon waking, sit on the side of the bed for 5 minutes before standing. Before you actually do get on your feet, take the opportunity while still sitting to bend over, reach hands, palms outstretched, to the floor. Stretch, stretch, stretch! Then, slowly assume the full sitting position. Repeat a few times to loosen up the spine. You may find that you may not need your usual morning dose of pain management medication as the spine isn’t ouchie after the stretching. Then, stand up, get up and GO! You’re ready to start your day. 

Most falls occur during the day, particularly in and around the home, when we might be rushing to get things done. Don’t do that! Slow down. I find myself doing just that; having a sit mid morning or mid afternoon to do another round of spine stretching exercises. It really is amazing how effective that is. What many who have made it part of their regimen will tell you is that it’s reduce dependence on pain medication; if it doesn’t hurt, no need to medicate/sedate. Consult with your physician about any plans reduce daily medications, though most may welcome your proactive decision. After all, stretching/movement is widely viewed as one of the best pain reduction treatments that can be safely done in the seated position. Adjust as mobility allows for more bang for the buck. Stepping up daily movement also contributes to an improved mood/outlook. If people are taking medications for depression/anxiety, they might also find that exercise has improved their status in that regard, as well.

There are lots of televised exercise programs that may be appropriate for the senior who wants to maintain muscle tone; chair yoga has become popular and can be safely done, providing a range of benefits that reduce pain to concurrently reduce reliance on medications. With access to care being impacted by COVID, it’s vital that everyone be mindful of how they move about to ensure safety in and around the home.

Make sitting and stretching at the side of your bed part of your daily start up!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, the boisterous Havanese. She can be reached via email at CARLA MACINNIS ROCKWELL

Want to age healthily? Drink your water

During my weekly physiotherapy session, as the therapist was contributing to my continued ambulation, moving my legs this way and that, pushing, bending, stretching,  conversation got around to water; hydration and the importance of monitoring fluid intake in seniors and elderly. Geriatric terrier, Miss Lexie, was supervising the work-out. She loves water!

Each morning, I drink two full glasses to put the my brain in gear; my therapist said he does the same. Morning hydration sets the stage for the first hours of the day when we are engaged in preparing breakfast, feeding pets, getting ready to start our work day inside or outside of the home. Watering the body is just as important as fuelling with solid food within the first hour of waking — break-the-fast. 

Hydration is critical to ensure sufficient joint lubrication. Ever notice when you walk, you  sometimes hear bones creaking/scraping? Or when you move your arms or head, you feel and hear bones grinding? That is a clue to the need for more water; your body sending you messages to ‘top up’ not unlike when you fill your car with gas when it’s almost running on Empty. All very logical. Your body is a machine that requires daily fine tuning with water, food, exercise, mental an d physical stimulation,  and rest. Sometimes, situations present that interfere with the daily routine. For the past number of months, COVID has really messed with our daily routines. Folks working at home have relaxed schedules and may forego regular meal times and totally ignore signals to hydrate.

Symptoms of dehydration in the elderly may sometimes be subtle, but not drinking enough water and fluids can have impact on aging bodies such as mine. Severe dehydration can lead to confusion, weakness, urinary tract infections, pneumonia, bedsores in bedridden patients, and other serious conditions. Aging with cerebral palsy, I don’t move about a lot, but each day, I undertake several routine range of motion exercises that I’ve done for years. 

I educated myself early about the impact of aging on cerebral palsy of the spastic diplegic type and got into the habit decades ago of drinking lots of water, notably hot lemon water with clove and honey, convinced that this particular hot beverage has contributed to my good health. Certainly, by virtue of not being one to go and about much, even pre-COVID, my risk of flu and the like is reduced. That does not mean that I can’t/won’t ‘catch’ something during my city travels. That I protect myself with ‘top-shelf’ nutrition and supplements to enhance bone and muscle integrity ensures that as I approach my 70s and beyond, I”ll be in good shape physically, mentally and emotionally.  I am what I eat. So too, I am what I drink. 

I never gave much thought to becoming dehydrated, as water has been a huge part of my day. I do, however, often think about people in care homes or those at home alone who forget to drink enough water. In the care home setting, I’ve always felt that staff should look to making rounds  with trays of water; even flavoured water might be an alternative for those who claim not to  like water. After meals, offer a glass of water to aid digestion. Offering beforehand tends to create a full feeling and people may not eat enough of their meal.  Sufficient water intake contributes to  a greater level of alertness and concurrent lessening of combativeness which is found in some patients with early, or even fully involved dementia. Drinking up really does improve mood and that makes life more pleasant for everyone.

  From the medical/physical perspective, severe dehydration is a potentially life-threatening emergency; it can cause serious damage to kidneys, heart, and brain; to avoid severe hydration, respond to signs of dehydration by drinking fluids that rehydrate. Through the day, I do what I call my ritual walk-about.  I keep 500ml bottles of tap water in the fridge and grab one before I walk and then have another when I finish. A third bottle is carried back to my desk or to the table by my lounge chair. Sometimes, I’ll bring two. 

As a person with multiple disabilities doing quite well on my own, all things considered, it’s vital that I choose food and liquid that enhance performance of my body so that it doesn’t let me down. Though I’ll never be as graceful as a runway model or figure skater, I do maintain purposeful walking. Given my ‘advanced age’, I’m thankful that I’m still able to put one foot in front of the other so that I may continue independently living, with very few interventions. My life hasn’t changed much in these days and months of COVID. I’ll always choose water.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, the boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell

Municipal planning should put mobility needs first

After reading the article about the super-wide sidewalks on Needham Street, in downtown Fredericton, memories returned me to those years, long ago, when I lived on Charlotte Street, before I got a wheelchair or a scooter or a walker (for in home use only). I used to walk to work, stepping along, using well-worn wooden crutches. I still have them! So many of those sidewalks were a floppy spastic walker’s nightmare. Deep pits and broken sections. Scary! Many are still scary. Baby boomers and beyond demand and deserve upgrades to those necessities for a safe quality of life. Aging well involves exercise and walking is one of the best. I never understood folks paying thousands of dollars for ‘walking’ equipment to be used in the house when that particular movement, combined with fresh air is one of THE best exercises. According to my late father, walking and swimming were excellent exercises from cradle to grave. 

At 66, aging with spastic diplegic cerebral palsy, I still walk, using a hand touching a counter, furniture or a wall to guide/balance my way along in my home. Now, I have to be watchful for a puppy as I move about; he’s convinced that whatever’s in my hand must be in his mouth — he leaps at me. Behaving better as he matures, he’s learning to live with a lopsided old broad of the human variety and a crotchety old diva of the canine variety. Chez Rockwell is NOT a man’s world! For now, he’s a country boy.

City living is something I’ve considered revisiting but in these times of COVID, moving is not an option at least for now. It’s nice to know, though, that city sidewalks are transforming, making movement  easier for those who are differently able; more efficient and safe. Safety is critical. I’d be able to easily use my wheelchair, tethering a dog to each arm as I did in the 80s, when I, my husband, a pair of terriers shared and 4 cats shared a downtown apartment. On my own with the dogs, living in Fredericton would be a great opportunity for more social connection. Perhaps before I’m 70! 

Making changes to foot and ‘wheeling’ traffic paths would assist those with mobility disorders in a very significant way. In their current state, many sidewalks across the province and across the country are not safe. For many in my age range, we are, in reality, one serious fall away from care home living. Improving surface quality of sidewalks and other areas of foot traffic where users of wheelchairs and walkers travel also contributes to the  economy. Health and wellness  allows for continuity in the work force which stimulates the economy.  Many persons with disability have paid their way for many decades of working life. It is only fitting that the places where they live are accessible to them for leisure activities or for conducting personal business, like walking or wheeling to shops and entertainment venues.

An added bonus of widened sidewalks and safer paths for foot, bicycle and assistive devices mobility is that automobile congestion is lessened. Having people out and about, interacting and involved in their communities lends support to local economy. Even in these COVID times, exercising mask compliance and social distancing, people can still maintain community connection. Though physical and emotional landscapes have altered, perhaps forever, that may not be a bad thing as folks get on board with working with the changes as they present themselves. Community planners united with residents living with challenges to mobility could develop walking paths and outdoor spaces that are more inclusive and safe. 

Based on the literature, statistics bear out that an engaged, active senior or person with disability is less of a burden on the health care system and more likely to be involved in community life on a sustained basis if components of accessibility are maintained; like sidewalks, public washrooms,  access to shops and other places where goods and services are available.  Widening sidewalks, making them safer, is one way that communities can enhance quality of life for those with challenges to daily living. A serious fall on sidewalks that have become unsafe has serious consequences for anyone, but for someone like me, who relies on hands and arms as part of freedom of movement, a fall could prevent me from meeting my daily needs. 

Cost of sidewalk/pathways upgrades would be mimimal compared to the health care costs associated with caring for a fall recovery patient at home or in hospital. Improvements would pay for themselves in short order in a forward moving economy. A win-win!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, the boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell

Here's how we care for each other during COVID

“The love of learning, the sequestered nooks, And all the sweet serenity of books.” Henry Wadsworth Longfellow’s words are timely in our new age of COVID.

With so many of us confined to quarters because of the global pandemic known as COVID, we’ve had to come up with ways to maintain our mental and emotional health, as well as meeting the needs of physical self-care. 

The way of learning for children, from nursery/kindergarten through high school has changed dramatically, with pod learning growing in popularity in neighbourhoods across the country. Aside from that, how people occupy themselves ‘after hours’ is critical to emotional wellness. Board games, story time and reading are particularly good ways to engage younger children. Learning how to make a grocery list, budgeting and meal planning are ‘tools of the trade’ of independent living for older children that can be undertaken at the kitchen table. Perhaps one child could video tape a meal prep with a running commentary. Expanded into journaling, these are all opportunities for learning to live in the world. Families still have to eat!

With holiday time and family gatherings upon us, many are struggling with what to do and how to do it — safely. How we celebrate long-standing family traditions and community holiday activities has changed significantly and many are finding the emotional toll is wearing them  down. But they’re not out. It’s important to involve all members of the family, as their age allows, in planning celebrations during COVID confinement, mindful that ‘this, too, shall pass’. If we all do our part, COVID will become a distant memory and our lives will return to some semblance of normal. In the meantime, be WE people, which is  the best way to ensure that members of families and of communities stay healthy, giving health care professionals a reprieve from wondering who’s next. They’re exhausted, too, but they keep on going, looking forward to their own family time.

Home-bound gatherings can become something unique and memorable, using ourselves, our talents and our life experience to create a holiday season that won’t be forgotten. In fact, some of the things we do to make it through, without all that we knew from holidays past, may find their way into celebrations in our futures. It’s easy to talk about cliché silver linings but ultimately how we conduct ourselves in our own bubbles impacts how others around us will respond and accept that it’s more important to follow one simple ‘rule’ - wear a mask. COVID is scary; we all know this and those of us who are considered ‘at risk’ must be extra vigilant. 

Pandemic ‘down time’ is a perfect opportunity to embrace the value and joy of reading; quietly reading on ones own, reading to young children, or reading to seniors who appreciate the time spent, human  to human to share a good story.

COVID confinement presents a host of  stressors that have impacted the very young to the very old with days seeming to run into each other with the ‘sameness’ of routine. Lost is the out and about business in small villages and larger communities, which contributes to  enhanced quality of life. This down time has been particularly challenging for seniors, especially those who live with any sort of illness/unwellness that already diminishes community participation. The isolation is palpable. Holiday time when families, large or small, gather to share a few days together, with traditional meals prepared with many hands are not going to be possible in this time of COVID unless people are vigilant about mask wearing, distancing and quarantining after a ‘bubble banter’.

More common in the US, but a concern here in Canada is that schools opened with various COVID protocols in place and things chugged along fine for awhile until one or two ‘bad apples’ derailed everything with essentially a toddler tantrum. Adults, parents of children who must be in school, however it is formed in these times, must stop being so thoughtless. The minor inconvenience of wearing a mask when not able to socially distance is the least we can do to keep each other and our community healthy and safe. To view mask wearing as a violation of one’s rights is a form of abuse against community. Sadly, there are some among us who spent their entire lives thinking only of themselves, now giving no thought to the reality that COVID impacts everyone  — all of us!

There is so much that we can do to get through these uncertain times. Though there are many places in this province and others across the country that are not part of the information highway, the internet is a tool that allows for a type of connection that can contribute to stabilizing emotional health of those most at risk; the chronically shut-in. Reach out and tweet someone! 

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, the boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell

With rambunctious new pets, safety is key

Mr. Malcolm Rockwell rested and ready!

On 22  September, I went to Fredericton and returned to Chez Rockwell with a housemate; an 8-week old male Havanese puppy. His name is Mr. Malcolm. Miss Lexie and I have been in a bit of a funk since Mr. Digby left us in June. A puppy would liven up the place. 

Several nights ago, I couldn't find Mr. Malcolm. I called and called. Nothing! I was freaking out. Panicked. I called my dinner and a movie pal (shouldn't have done that!) Called my next door neighbour (they were already in bed! oops). Didn't have my village friend's cell number so couldn't get in touch to cancel her visit. Mr. Malcolm made an appearance. No clue where he was. The next day, I discovered his hiding place. He had crawled under my lounge chair from the back and had brought a chew toy in with him.

I told my sister-in-law about his exploits and she shared about an accident with a puppy, one of a pair of 8 week old little rascals belonging to a friend; one of them had his neck crushed in a chair such as mine. What a horrific accident and how very sad for everyone who loved that little puppy. 

Wasting no time upon learning of that tragic event, I acted immediately. I folded up an old Quickie wheelchair cushion and positioned it in the space under the bottom of the chair. It fills almost the entire space so there’s no way Mr. Malcolm can pull it out or get around it.  Since blocking off access, he’s shown no interest in poking around. Win for me!

Then I began thinking about what other things he’d find to entertain himself. Shoes!! So far, though, he's not gone after the row of footwear lined up under my bed. 

Mr. M. has enough toys to keep him entertained for years; the kitchen has a step down into the laundry area, adjacent to the TV room/office, separated by a wrought iron gate purchased in the early 80s when I got my first puppy.  It has been well used through the live of many terriers and several cats.   Confined on the laundry room side, the little explorer pinched his snout on the lower portion of that gate where part of the ornate design is just wide enough for a furry face. Squeal! I picked him up and looked him right in the eyes and said “NO”, as I pointed to the gate. He tried to bite my nose but he got the message. No face planting on the gate since.

As a person with gait/movement disorder, I wanted a dog no taller than a coffee table, full grown. All of my canine companions have met that criterion. It’s important if you have a puppy (of small breed, particularly) or or planning to get one, police all trouble spots thoroughly. And a big FYI - crate training is CRITICAL. Just DO it!

I haven’t had a puppy for decades and as Mr. Malcolm started exploring a world away from his mother and littermates, I questioned whether I had lost what’s left of my mind. Nah! I’m up for this. 

Still uprightly mobile at 66, I recently received a great compliment from a visiting physiotherapist who said I was one of the most flexible people she’s met who is aging with cerebral palsy. All the hands and knees floor scrubbing, incorporating exaggerated stretching motions, has paid off. 

I’ve decided that I need a push broom to clear Mr. Malcolm’s toys out of my way as I negotiate the TV room/office; there are squeaky toys and plushies everywhere. No point in putting them back in the toy basket each evening; he’ll just drag them out again and start flinging. Once he’s over the teething phase, we will be having proper play time; he’s already learning to sit/stay. I toss a toy and he’ll bring it back, but not consistently. He’d rather lie on it.

The other day, through the gate, he saw me scrubbing the kitchen floor and his head was going back and forth like one of those bobbleheads toys folks have mounted on their car’s dashboard. So funny. Then, he started barking that high-pitched baby dog bark. There’s no way I’m allowing him to be anywhere near me when I’m scrubbing; he’d totally destroy my multi-tasking routine of floor cleaning and spine stretching. Visions of  finger nips, pulled hair and upset pails of water danced in my head. Nope, not gonna happen! Maybe by his first birthday! There’ll be no official greeter role at Halloween for him either; thankfully, I don’t get trick or treaters. I’d be exhausted having to  go to the door multiple times. 

Though no tree for Christmas 2020 at Chez Rockwell, there’ll be lots of seasonal music. Maybe Mr. Malcolm will learn to sing!  

Carla Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, the boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell

When we volunteer, we build our community

Attending members left to right:  Heather Sampson, Tanya Merrett, Al Robertson, Gordon O'Leary, and Sarah English (not pictured).

Several days ago, I laid a fire, the first of the season, though the compressed wood bricks I use seemed a bit dampish. I left the door of the air tight stove open to get a good, hot fire. It started to smoke; was getting bad! The den filled with smoke and I had to get upstairs quickly. Miss Lexie was at the gate barking like mad as the smoke alarms were going off. I got her outside to her pen, out of harms way and called a friend who was on the Stanley Volunteer Fire Department. His wife and I chatted for a bit and it was decided I should call the fire department. They were on scene quickly; first to arrive was neighbour, Sarah English, just a few houses away, whose training as a volunteer had been COVID curtailed for a time but has since resumed. Chatting about her experience, she shared that training never ends.

“Every Tuesday evening we gather to train to maintain our skills and certifications and to learn and stay up to date with new techniques. We are always looking for new members to join and the Tuesday evening sessions are a perfect time to come. Sarah, goes on to say, “we’ve resumed training. One of our members closely monitors the COVID regulations issued by the Department of Health so that we remain compliant with their stipulations.” 

It wasn’t long until the fire truck rolled into my driveway and 4 members went about assessing the scene; I was very impressed with their efficiency. It was determined that I needed to get the flue cleaned at once. I called Brown’s Chimney Sweeps in Fredericton and they’ll be coming out within the next few weeks to ensure everything is safe going into cold winter weather.

Stanley Volunteer Fire Department was established in 1951 as the Stanley Fireman's Association; over the years groups of men, then women, stepped up to take their place of service  in their community. I am so thankful for their presence in our communities. When my husband and I first moved into our home in 1991, we experienced our first wood stove fire, having been told that the flue was cleaned. NOT!  A flue fire wasn’t long rocking our world. I was very concerned about our geriatric Westhighland White Terrier who was struggling to breathe; my anxiety was immediately allayed when a  fireman put an oxygen mask on her. Friends for life! The fireman who attended my dog became my computer repair guru and kept my systems tickin’ along for years. Thanks, Stewart.

At that time, I didn’t have an enclosed porch and  run like I do now. Now, all  these years later, I was glad of that as my mobility isn’t what it used to be as I age with cerebral palsy. My first concern was getting elderly Miss Lexie to safety. She stayed in the  pen until we got the all clear to go back in the house. Gosh, it was smokey. Having a  volunteer fire department in rural settings is truly a lifesaver; sadly, we can get complacent and may take them for granted. In many communities across the province and across the country, volunteers are ‘aging out’ and fire departments and other such  volunteer services need new blood. COVID has altered how training programs are now conducted but new members are needed. 

Sadly, we tend not to think about how much time and energy is required to maintain efficient volunteer services such as a fire department. Their members take the job seriously and are frequently upgrading skills so that they can serve the community to the best of their ability. Alas, they can’t do it forever and they no doubt would like reassurance that there will be others coming up behind them to take over when they are no longer able to meet the demands of the job. What’s often missing in this age of ‘gotta have it right this minute’ is that WE people need to free themselves of the ‘stuff’ of the world and get acquainted with the substance. Contribution to community is a legacy they leave to  generations of their families that grows with them. Look to those communities where 2, 3, even 4 generations of families work  at their local fire department, soup kitchen, homeless shelters, animal shelter; all doing their part.

COVID may have changed how we interact but it hasn’t changed the reality that the needs still exist. One thing that has changed is that older volunteers are worrying about their health and safety in the midst of COVID; that is reason enough for community members from early 20s and onward to step up to take their place in support of life and limb in the place they call home.

Carla Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese. She can be reached via email at Carla MacInnis Rockwell

Wearing a mask says I care about you

  Photo: Dave Sidaway/Postmedia Network

My last commentary went to press before it could be amended to correct an error not of my making!  I discovered something about myself via the online rendering that I didn’t know. I have 6 sisters! That’s enough for a basketball team; 5 plus a manager. Since I can barely stand up, I’ll be manager. The youngest  (since they’re pretend sisters), will be water carrier and fetcher of snacks!

There’s a lesson here. Anyone who knows me and read the column in papers in which it appears would have had a “What?” moment. Where did Dr. Jim and Peg hide the other girls?

Wrong words can be read, uttered and spread hither and yon, taking on a life of their own, greying what is true and what is not true.

My point here is that words matter. Words have an intent that conveys what we mean, but how we say them and how people hear them aren’t always synonymous. COVID mask wearing, as example — it’s not mandated. Yet. 

Hear the words coming out of the mouths of many of our neighbours south of the border. Scary words are creating scarier times. Inconsistent messaging from the top down is creating a mistrust of science, of medicine. Schools are open and school nurses and educators have policies in place; in the vast majority, children and staff MUST wear masks, but because communities don’t have a firm masking mandate, children are confused: “I must wear a mask at school”; “I don’t have to wear a mask at the market”; “I don’t have to wear a mask at lots of restaurants”, “I have to wear a mask at church.” Back and forth. Forth and back! Children need guidance, adults need guidance. Who is going to guide ALL? Confusion arises when parents aren’t as committed to consistency of message and taking mixed messages out in the community with their children. A hit and miss affair, the very half-hearted effort that can cycle the virus out of control at a speed health care professionals and others won’t be able to get in front of. 

We’ve seen the videos on the internet of  out-of-control men and women of various ages screaming at wait staff in all manner of retail establishments. Screaming when told to wear a mask while on the premises. Screaming that their rights are being violated and they don’t have to wear a mask. What they fail to understand is that shop keepers don’t have to serve them and are within rights to ask them, nicely to leave. How many of those screamers thought about what they would say before they spewed? Did they think at all? What did they think of their behaviour afterwards? Were their  children or grandchildren witness to their infantile outburst? How did they explain the behaviour to youngsters? Or did they? We must remember that children learn what they live; in these COVID times we must be teaching children, by example, that we care about the health of everyone, just as we would hope/expect them to care about us and our loved ones. 

Children’s school life has been significantly altered for the foreseeable future so it’s incumbent upon parents and other adults in their world to ensure that their emotional health is monitored, even if on a daily basis, checking in with a “how are you feeling today?” Adults in their world must vigilant, on the alert for signs of  trouble/stress. Conversations are important to gauge how they’re really doing and what might be done to smooth their  way going forward. Pod play groups, pod learning groups and other networks of social connection can be thoughtfully explored when groups of parents of like mind get together and co-operatively organize. Once a rhythm is established, days get easier and children will thrive. Parents and others can then step back and see that life in COVID times can be just fine. Be respectful and wear a mask. Stay safe.

Carla Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese. She can be reached via email at Carla MacInnis Rockwell

Brotherly love in COVID times

Jason & Melanie after 6 months separation

Growing up in rural New Brunswick, daughter of a country doctor and a stay at home Mom who was also the occasional substitute teacher in the local school system, I was #7 of 8 children. We had no groups/gatherings for siblings of persons with disability to get together to discuss anxieties, fears, the future, their role in the adult life of their sibling with disability. Tough conversations about challenging situations.

My parents and I were fortunate that my disability, spastic diplegic cerebral palsy, wouldn’t significantly impact my adult life with regard to independent living. At 66, I’m still at it, maintaining a home as an aging widow lady, kept busy by a similarly aging Maltese terrier with attitude. So far, good!

Many children with disabilities, as they ‘age out’ of paediatric services, often grow up without sufficient networks in place to pick up where parents and early education leave off.

In these COVID times, adults with disability, particularly those in group homes, have been challenged by lack of access to family and friends. For many, their daily routine has been turned upside down, not unlike seniors in care homes across the country. Even seniors with dementia have a sense that something isn’t ‘right’ in their world and it’s difficult to explain to them what is going on. Such is the case with young group home residents who have a certain level of intellect that allows them to carry on conversations and be engaged in meaningful ways. 

In the group home setting, where several adults with challenges reside as a family, with two or more team leaders acting as ‘house parents’, the challenge of explaining to 6-8 men and women why they can’t go to work, why they can’t go to social club, why they can’t go to the park with their brother or sister is exhausting. Several times a day, the same questions asked and the same answers given.

Several years ago, I stumbled across a Facebook group, The Sibling Collaborative, born in Canada in 2016, boasting 462 members. I was struck by the recent entry of one young woman, Melanie.

Melanie and her brother, Jason, had to wait 6 months to be together — at a distance. Can you imagine what that amount of time means to someone with challenges to daily living that impact mental acuity and understanding? To not have that daily presence in their world and not able to understand the why of it. The pain of the absence on the non-disabled sibling is palpable as they can’t give what their brother or sister is used to; a hug, a song, a story from a favourite book, a dance around the lawn; watching a movie together, though one may not understand a word of it. Quality time spent has become quality time lost to COVID.

Another group member shared the anxiety her brother was feeling as he communicated via a white board; she feels she’s not doing enough and he is wanting to do things and see people but he cannot. COVID has rocked his world; lashing out is how he copes. What else can he do? What else can his sister do? 

Staff in the group home settings are tasked with steering intellectually challenged adults already frustrated by so many things they will never understand. The days are long, confined in place with no access to usual activities which, for years, were part of their worlds. I applaud all those health care professionals and educators in such settings who stay the course. The constancy of people is critical as routines change. Being able to hug the residents as you share the space, sit at the table to share meals, knowing that the end of the day, you’ll have to repeat the same thing tomorrow. 

Behavioural techniques already used can help residents adjust to changes in routines; modeling and reinforcing desired behaviours, picture schedules, timers, and visual cues. Local mental health clinics or special education agencies are excellent resources for guidance. If some residents are struggling, perhaps their physician could visit to offer reassurance. Special times demand special considerations and health care professionals will endeavour to do all that is necessary to ensure that adults with special needs are treated with respect and dignity as they struggle with the confusion in their world.

Adults with disability who relied on others, including siblings may be at higher risk of infection during these COVID times; people who have difficulties washing their own hands, blind or low-vision individuals who must physically touch objects for support or to obtain information, and those with trouble understanding and/or following public health guidance on physical distancing may be at higher risk.

Men and women guiding siblings with disability through COVID deserve all the help they can get. Lend a hand!

Carla Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca