Recently, I visited my childhood parish priest, Father Joseph LeBlanc who now resides in a retirement complex in Fredericton. Thankfully, to cruise the halls of this well appointed home away from home catering to the needs of seniors who need that little extra somethin’ somethin’, I chose to use my little red racer aka known as the beat up bucket of nuts n bolts. Using my crutches would have been exhausting and potentially hazardous to my health, given my relationship with slippery floors is not the best.

I, in my chair, appeared at Father Joe’s door with various foodie treats ready to put into his hands. My sidekick, Sandra, who is a tremendous help to me on city excursions, carried the bags. 

After a hello and a hug, let the visit begin! As I  looked around the room, I took in the some of the memories of Father Joe’s life on display, with lots of photographs, books and figurines; a stereo system prominent. He was happy to share a bit of history about this piece or that. Noticing the lovely furniture around  his quarters, it was clear he had a good eye; the furnishings were his own, brought from his previous home. After he examined the baked goods, I put them in the fridge. He needs a bigger fridge! 

Glancing around the room, I honed in on the window — it had no blind and the curtains were sheer. I slid into home decorator mode and envisioned what I’d do to make such a space work for me and my own needs when the time comes. Immediately my thoughts went to “I could never get a good sleep in here without some serious liquid refreshment! Please, God, let them hold a Happy Hour!” Room darkening blinds and drapes work for me! Before my first night in such a well-appointed suite, I’d trek to a department store for blinds, curtains, and installation hardware. They’re allowed `cause I asked. 

Not only am I conscious of what I put in my body, I’m also aware of those things with which I surround myself to enhance quality of life. Hydrotherapy, chromotherapy, and aromatherapy are significant parts of my daily living and all are especially helpful to one who ages with the neurological insult of cerebral palsy. To turn of the ‘busy busy’ cerebral palsied brain at bedtime, I benefit from a sleep mask. Contributing to a solid, sustained sleep, it’s made a huge difference in my day to day wellness. Also helpful is that the room be as noise free as possible. The ceiling fan in my bedroom makes an awful noise so I turn it off at night. I’m too short to whack it with a hammer!

Chronic poor sleep inevitably leads to health problems so maintaining a natural rhythm of exposure to daylight, and darkness at night is an essential component of sleeping well.  

Sleep deprivation can lead to higher risk of chronic health problems like high blood pressure, heart disease, and stroke. According to Harvard Medical School, for people with hypertension, one night without enough sleep can cause elevated blood pressure all through the next day. Not getting enough restorative sleep also influences our appetite. Inappropriate or ill-advised food choices often stem from insufficient rest. Mindless eating is often rooted in lack of rest which sets the stage for making bad choices; conversely, having a snack before bed is encouraged by health professionals as a sleep inducer. For myself, it’s either a bowl of cereal or home made yogurt with berries. Works like a charm! 

I am fortunate not to require sleep aids in the form of medications — key for me is setting the stage for rest/sleep before I actually go to the bedroom and get into bed. After dinner, lights throughout the house are dimmed; two electric aromatherapy lamps are turned on until bedtime. During the day all is bright - the TV room/office space, where I spend most of my time has no window coverings —lots of daylight. The other common spaces have a window blinds that are never lowered — bright/airy spaces that contribute to a sense of well being. In my bedroom the blind is left lowered and the drapes drawn, as time saving measures which serve to reduce the risk of falling injury to accomodate repetitive tasks.  

So long as I live home alone in rural New Brunswick, sleeping requirements and habits will be maintained. No doubt when the time comes and a move to more ‘assisted’ living is required, productive conversations will be held with providers of care about what would be best suited to my aging in a new place, notably how to make the that beauty sleep period as beneficial as possible. With good rest, a gal will always look her best, right?

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

Inclusion grows up in small town New Brunswick

The community of Bath, where I grew up, lost two of its finest — on 8 April, Robert “Bob” McDougall, age 75, passed away at Scott’s Special Care Home in Woodstock; two days later, Jeanne Martha (Toner) Brennan, age 88, passed away at Carleton Manor,  also in Woodstock. She, along with her late husband Bill, raised a family of 14 children in Johnville, on the outskirts of Bath. Their children were educated with the MacInnis clan.

Spirtuality defined both of these  fine examples of humanity who were quiet forces in this quaint village on the St. John River — which brings me to a key point of this week’s sharing moment. 

If you don’t think you can make a difference in the life of someone in your community, think again. Bobby McDougall made a huge difference in the community of my childhood. He had many friends, not only in Bath, but also in surrounding communities, like Johnville, where, in the family home, Jeanne Brennan lived until she moved to Carleton Manor in December of last year. On my last visit with her, a few years ago, I brought her a loaf of home made bread and some muffins. She insisted that there had to be a cup of tea to go with! She recalled my snowmobile treks from Bath to her home, about 3 kilometers away. Through the woods I’d go; she and Mom never abandoned worrying about my antics, but I’d get it done! Just as Bobby always did.

From Nancy McQuade, a lifelong Bath resident: 

“Bobby loved going to the Johnville picnic and the Bath Fall Fair and getting to see all the people  he had not seen since the last one. He would always call for weeks before the event to make sure I would go down to Woodstock to bring him up for it.  He would tell me what time to pick him up.  I did not dare be late.  One time I said to him ‘I will be there, Bobby, if I don’t kick the bucket.’   He said, ‘What does that mean, dear?’   I said ‘unless  I pass away,’ and he said ‘you better not dear. Who will take me to the picnic?’ Nice to be loved!!”

As a child, I got to know Bobby, Libby Hart, the daughter of the manager of the Bank of Nova Scotia, and Johnny Corbett, son of another of our church family. Bobby and Johnny were always at Sunday Mass.  Libby attended school, not letting the challenge of Down Syndrome stop her; sometimes, in third grade, she sat beside me. Our teacher, Carol DeMerchant, was her BFF. Known for her well put together look, Libby was a very stylish young lady  — she passed away in 2008 at the age of 57, having lived a full and active life. 

Though I was younger by a few years, we all had one thing in common. We four were differently able, growing up in homes where our ‘special’ needs weren’t at the forefront when it came to the important stuff of kids being kids. 

One of Bobby McDougall’s best buddies in Bath was Father Joseph LeBlanc, our parish priest at St. Joseph’s Catholic Church. Father Joe included both Bobby and Johnny Corbett in the celebration of the Mass on Sunday — they were, after all, part of the community. Before ‘inclusion’ became fashionable, they, Libby Hart and I were included! That’s just the way it was and continues to be today in Bath and in other small towns and villages.

Changing collective attitudes about ‘value’ changes the way children with challenges will feel about themselves and their place in the community. They begin to feel valued and appreciated for what they can contribute. Including children who walk differently, talk differently or think differently in events like birthday parties and sleep-overs sends a clear message that they don’t need to worry about the can’t do of their day to day world. Being together with other children just being kids is often just what it takes to forge a path to a life long connections. Much like what Bobby, Johnny, Libby and I had in Bath. 

Just as Bobby, Johnny, Libby and I made a difference, those who don’t live with such obvious challenges can as well. Offering  an hour or two of our own daily living to a frazzled mother of a child with learning disabilities who just needs a break. We can ‘just show up’ at the home of a family whose child needs daily physical therapy, for a show and tell. Bring doughnuts.  Let Mom show and tell you how particular exercises are done. Offer to pedal scrawny little legs a few times a week. I have many recollections of myself as that scrawny little kid who needed the legs ‘pedaled’. There maybe some among you who remember me learning to ride a two-wheeler. 

Get down on the floor and colour with a child who has eye-hand co-ordination deficits. You might find Picasso waiting to come out to play!

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

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.