A home of many brothers, and sisters, too

Yes, this is a family

A few years ago, I read an article that caught my attention with the opening comment by Maureen MacEwen, Provincial Co-ordinator for P.E.I. Child Protective Services — “Canada is having a foster care crisis, with so few people willing to serve that one province is preparing to house infants in group homes if necessary.”A sad commentary on how significantly this ‘social program’ has deteriorated, but it’s been simmering dry for years. It was inevitable.

In the 70s, ‘group home’ was a label, a name assigned to a home where the ‘mentally retarded’ lived. Over time, terminology changed but the prevailing attitudes still existed. So while it’s all well and good for the government to consider placing infants who are in foster care into ‘group homes’, there should be serious thought given to a long-term plan. Children, no matter the age, cycling around the foster care system from one ‘home’ to another, weeks at a time, months at a time, a few years at a time, has never been the ideal. Lack of continuity of care does cause emotional trauma as has been demonstrated. There is no need to throw money at more studies to prove the proven. Put the money where it’s needed - into HOMES; not just structures to ‘house’ children in need, children in crisis.

Children go into care for many reasons — it’s a sad reality that many cannot go back to the house where the biological parent(s) live, but the system sometimes seems to miss the mark when stepping in to remove a child or children from the biological family. Certainly, the child’s welfare is critical, but there needs to be a stronger emphasis on correcting what has gone wrong with the parenting/caregiving. Do the parents want help? Will they accept help that’s offered and follow through and not just go through the motions to ‘get the kid back’? A child is not a piece of property to be passed around like an ugly piece of furniture no one really wants, but someone will take it, even if only to fill that corner of the living room until something better comes along. Again, a sad commentary on our ‘throw away’ society. 

If parents in crisis were buoyed up to the point where they could stand on their own, moving forward, there’d in all likelihood be fewer children ‘in care’. If, without judgment, they were shown how to guide their children with less stress and less mess, the entire family dynamic has potential to change and self-correct. Not unlike many families outside the view of government scrutiny. Lives of families all across Canada go on, day after day as Moms, Dads, brothers and sisters live, work and play and parenting styles and welfare of children are not questioned. That’s the way life has rolled along for centuries.

For some families, something gets fractured and outside help is needed, sometimes court sanctioned. Given that children learn what they live, parents with proper tools have a chance to break a cycle and with that the notion of the ‘bad kid’ label fades. When parents who want to learn and grow see the fruits of their labour manifesting in the forward-moving behaviour of their children, all are winners. Instead of the ‘system’ patting themselves on the back, social workers and others need to respectfully acknowledge the efforts of parents and children in crisis. There’s too much focus on what’s wrong and not enough on what’s right and good.

If the parental unit is irrevocably broken, then a long-term ‘forever home’ elsewhere would be pot of gold for children in need. We hear so much about animal shelters wanting ‘forever homes’ for dogs and cats available for adoption. If children cannot be adopted, for whatever reason, would they not be better served in long-term home life situations, rather than short-term ‘foster’ care? Would studies to look into repurposing vacant buildings/heritage properties across the country have merit? 

Imagine being in a foster home and 3 days before Christmas, you’re moved. No explanation. Then April rolls around and you’re moved again, out of the district, with a different school Starting over. Then again in July! Multiply that scenario by thousands of kids every year, and we see a very serious problem. No wonder foster kids have a difficulty with trust and can’t settle in to ‘good’ behaviour, often falling onto the path of drug addiction, promiscuity, unwanted pregnancies, as history repeats itself. It’s time to change the care plan and explore the potential for success of a home for ‘a group’ - a group of youngsters that can, with supports become a family. “He doesn’t look like me, but he’s my brother!” Homes such as this would be not unlike the L’Arche community of group homes, but tailored for children from the very young to late teen who need long-term ‘Mom and Dad’ guidance. Think of the possibilities. 

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

Caregivers need care, too. They're exhausted.

“We must be willing to let go of the life we have planned, so as to have the life that is waiting for us.” These words of E.M. Forster resonated as I watched the documentary about Linda Rondstadt, whose music I continue enjoy decades after she came on the scene.

Ronstadt made the decision not to take the medication used to treat the Parkinson’s disease with which she was diagnosed in 2013, though she’d been symptomatic for several years, noticing changes in her voice as far back as 2000. The drugs she was prescribed caused nausea and vertigo, which is a risk one takes in trying to to tailor a regimen of currently popular medications to treat conditions that alter physical, emotional and mental health. 

Unfortunately, drugs used to Parkinson’s and cerebral palsy often have side effects that significantly impact daily life, setting the stage for a life that is not as enjoyable as it could and would be without being too sedated/medicated. Like Ms. Rondstadt, I am not a shut-in. I prefer to think of myself as ‘snuggled in’, particularly in winter months, when mobility is hampered by ice and snow.

Ms. Rondstadt and I also have another thing in common — we have to pick our battles, deciding what we want to accomplish on any given day. Living in our worlds is exhausting. Make no mistake about that. She’s advantaged by having access to lots of hands on help with the day to day, while here at Chez Rockwell, I do most on my own, under the watchful eyes of two aging canines. If I fall down and go boom, who are they gonna call?

The diagnosis of progressive supranuclear palsy, a severe form of Parkinsonism with brain wasting, ultimately found its way into Ms. Rondstadt’s medical profile. My eldest sister, who passed away in 2012, lived with PSP during the last several years of her life and cost of her care was significant. PSP is a cruel disease. In many respects, she was far more disabled than I ever was. Thankfully, my healthy lifestyle has contributed to my continued independent living.

As we chart a course for what’s to come in 2020, it is my hope that the medical community, from doctors and nurses to providers of at home care adjust their vision to include the critical need of support for caregivers who happen to be related to the person requiring extra attention and assistance. It’s no easy task being the spouse, partner or parent of a person living with disability, particularly for parents raising children with special needs. It’s expensive. Very often, the costs associated with caregiving come out of the ‘family pot’, compromising the financial health of the rest of the household. When children age out of systems of care that were subsidized, it falls upon parents and families to pick up the slack, so they often have to cut back in other areas of daily living. If there are other children in the home, their accustomed lifestyle is often the first to get cut. Not fair.

Our government needs to rethink what caregiving really is and that paying family members who provide care is one very significant way they can let its citizens know that they are of value and their lives matter. The physicial, emotional, mental and financial cost of caregiving is significant and in the end it’s counter-productive when what a family member is doing to help another is actually hurting themselves. No winners. A monthly allowance provided to each family who currently provides home care to a family member who cannot look after his own needs due to illness, condition or disease, would go a long way to reducing the overall burden on systems across the board. Think about it. Do the math. Many countries around the world have developed schemes that provide familial caregiver allowances.

As well, the government must be mindful of one key point. In reality, there’s no such thing as government funded; it’s tax payer funded. People are only asking for what they rightfully deserve as contributors to the government pot that assists everyone. You’re seeing the logic, right?

Caregivers are exhausted and they don’t often reach out, isolating themselves to the point where no one outside their daily world has a full appreciation for what’s really going on behind closed doors. The daily routine of caregiving, day in and day out for years, for decades, takes a toll. Financial packages available to families in need is the right thing to do if our society hopes to flourish into this coming decade and beyond.

As the days of 2020 start rolling out, perhaps all those local, provincial and national programs of health and wellness support will stand on common ground and finally DO the right thing for those who need a hand up. It’s time.

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

A clear vision ahead for happiness in 2020

Photo: Andrew Seaman/Upsplash

As we approach this new year, 2020, full of hope and promise, I find myself reminded of what a major effort it is for so many of us to ‘just keep on going’; to be happy. Persons with orthopaedic disability, who are able to function with some degree of mobility, exhaust themselves physically, emotionally, mentally and spiritually each and every day, perhaps questioning the ‘why’ of their existence. Caregivers are struggling with their own demons of fatigue, frustration, fear, anger, and even resentment. They can’t give up. They can’t give in. In their minds, failure means defeat. How wrong they are!

Government systems of support must take a closer look at what the long term, real needs are for both those who require in-home help on a daily basis and those who provide it — doctors, nurses, health professionals generally, teachers, pastoral care workers. Respite for caregivers, often a parent or sibling, is paramount. They are the often ‘tapped out’ resource that never get enough acknowledgement or ongoing support.

From early on, if I was to be a happy person, accepting myself as I was would be necessary so that I could develop the gifts I may not otherwise possess had I not acknowledged that my ‘different’ness was nothing to be ashamed of, to wish away, or to ignore. In reality, ignoring it was never an option. I liken my differentness to a companion who will be with me forever; a part of everything I did, from rising in the morning to going to bed at night. My companion’s name is cerebral palsy Perhaps, in large measure, my companion would define my character, shaping the stuff of me that would ultimately be the best of me. 

I had to accept that my life was going to be different --- not in a negative way, not special — just different. I certainly never wished to be someone else, though I did wish that I was more able in terms of mobility, as in being so, I’d have possibly been more readily included, particularly in the formative years when children are establishing bonds and social networks.  In being more physically able, my career choices would have been expanded, but would things have gone differently? Who knows? There were and are always going to be things that I will never do by virtue of living with cerebral palsy. I don’t use the term ‘have’ when speaking of my ‘companion’. 

Too often, people define happiness based on what others bring to them or share with them, whether it be the tangible or the intangible. Sitting back and waiting for happiness to come to us is wasteful of time and energy which could be better spent creating our own happiness and simultaneously spreading that  happiness around us, to siblings, to friends, to colleagues, to a spouse/partner. Happiness flows out, flows around, then flows back after bumping about to touch others; a complete circle. 

We who live with limitations to full participation in daily life learn ways to participate and create a unique happiness; this is, of course, contingent upon whether our intellect is intact and if we have even a limited awareness of our surroundings. It’s long been acknowledged that even the most profoundly disabled, in the absence of full cognition, can still experience happiness. Happiness is not something that should be weighed or measured, as what makes me happy may not make another happy. It should not be our job to ‘make’ another person happy – to position ourselves as a ‘happy maker’ has potential to be exhausting; ultimately, it may well destroy relationships. 

Frequently, I have heard people say that they wish they were happier, which begs the question – what do they believe could or would make them happy, happier? Sadly, in this ‘stuff’ driven age, people assign a happiness quotient to the quantity of their accumulated ‘stuff’ – I was almost a victim of that thinking until I abandoned it years ago. Certainly, I enjoy an array of creature comforts, some by necessity to make my life easier as I age with a number of disabling conditions. I also enjoy a number of things that don’t fall within the necessities of life purview – fine scotch, fine foods, my books and music, pleasant décor; as with all things, never anything to excess. To coin an oft-used phrase – all good things in moderation. That has defined my life from the outset with regard to establishing my selfhood, my personhood – moderation. 

As you chart your own course going into this new year and beyond, keep your eye on your own prize. Your happiness is inside you — take some time to find it and help it grow! 

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

Making the case for automated external defibrillators

“Retired doc questions lack of defibrillator in seniors’ home,” was a headline that caught my attention.

The more I read, the more incensed I became, especially with the comment about the facility being a “social institution and not a medical institution”. Though neither a nursing home or a special care home, it does provide a measure of nursing care. By definition, nursing is “the profession or practice of providing care for the sick and infirm”

Are there nurses or nurses’ aides on the premises at Ste. Anne Court, the facility referenced in the story? If so, then the facility is, in reality, a social institution catering to medical/health and wellness needs of its guests.  It reasons, then, that as a retirement residence providing such care, it should have an automated external defibrillator (AED) on the premises. Amongst management, there should be no protracted discussion about it. Just do it.

In retirement settings such as that where retired doctor Sydney Grant lives, it would be reasonable to expect that a defibrillator, whether used one, twice, or never, be available. Most residents would still be looking after their own daily care needs, illustrative of the fact that they may, in theory, based on personal health profiles, have several ‘good’ years left. Should they suffer a ‘cardiac event’, a device to shock them back to rhythm would allow their life to continue. In the advanced geriatric or those with health issues requiring daily nursing care, I can understand the position with regard to administration not feeling they’re necessary or even appropriate given that advanced directives may be in place that preclude resuscitation. But that's not the whole story.

Dr. Sydney Grant, one  of 120 plus residents of Ste. Anne’s Court, is perfectly within his rights to expect that appropriate equipment will be made available for the care and comfort and dare I say survival of the residents, many of whom have probably been diagnosed with heart disease or defect. When minutes matter, access to appropriate equipment is critical and personnel trained to use it would be a matter of exercising a sound duty of care. To do otherwise is a dereliction of that duty. It’s not unrealistic to suggest that waiting for a timely response from outside the facility may be too late and the person in crisis could expire without defibrillation. Then there’s the matter of staff or visitor in cardiac crisis who would be at considerable risk without timely response/treatment that a defibrillator would provide. 

It defies logic that such a life saving piece of equipment is not standard where seniors reside, yet they’re becoming readily available at skating rinks, various sports facilities and schools. That tells me that those of a certain age are not being treated with the same level of care and concern as younger individuals. Oops! Is that  discrimination?

Most malls, fitness centers, and major transportation terminals like train stations and airports will have AEDS nearby as well. These are often located near water fountains or restroom areas. Knowing location is extremely important during a sudden cardiac arrest. 

From my perspective, in an effort to reduce wait time to defibrillation and to improve cardiac arrest survival, it makes perfect sense that more units be in place in settings that are densely populated. Perhaps, administration of facilities such as Ste. Anne’s Court don’t consider themselves ‘densely populated’; regardless, there is sufficient traffic on a daily basis for them to rethink their position. The life of ‘one of their own’ may depend on it.

The fact that Dr. Grant was prepared to support the cost of the device suggests that he feels that it IS necessary and that he, in being proactive on behalf of his ‘house mates’ was making the case for life saving devices to be available to all. Besides, it’s the right thing to do. To have dismissed his generosity out of hand makes one wonder why they’re so opposed to a device such as an automated external defibrillator. Training staff or even residents to use it wouldn’t be difficult and having several available should the need arise adds another layer of care and comfort to the retirement residence experience.

Given that I live with the heart condition of aortic insufficiency, I’m pleased to know that should I need immediate cardiac care intervention while out and about in the city, it is likely to be readily available in advance of an ambulance ride to the hospital. Why then, can it not be in the very place where it would be likely to do the most good? Administration at Ste. Anne’s Court and other such accommodations for seniors need to step up their game. 

Christmas is coming. Give the gift that could save a life.

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

Communicating compassion is easier than you think

Photo: Chris McCorkle

“Some people need to be told that they’re worthy, that they are loved,  not because nobody ever told them before, but because someone told them they weren’t.” [Eliot Knight]

With the holidays soon upon us, we must be mindful that not everyone will have the warm and fuzzies, convinced they’ve got nothing to celebrate. They’re stressed, physically, emotionally and often, financially, stuck in the rut of believing that the celebration of holidays requires a lot of money, a lot of presents, a lot of stuff. 

A group of friends in like circumstance getting together for a pot luck comprised of favourite recipes with a few special, festive treats added to the table can a memorable holiday party make. Cost sharing to create a delicious meal is a popular way for those who would otherwise be alone to ‘make the day’ for themselves. Small gatherings such as these are great ways to spread the word — that people are worthy and that they are loved, making meaningful conversation easier. What flows out of those meal time exchanges may be the foundation for other  interactions over a sustained period. Lots and lots of words. Words connect us in ways that we don’t often think about. As we become more comfortable with words coming and going, we become more open to include more people and more words into our sphere. Our worth bank grows.

There are many among us, both young and old, who, for whatever reasons have received messages that defeat them, deflate them, demoralize them. Heard often enough, one grows to believe them.

We need to always remember that words matter, especially when engaged with children, who often lack the filters adults rely on to sift out the noise. Children have no appreciation for the subtle nuances of language so we must be short, sweet and to the point when answering a question or when asking something of them.

This time of year, children understandably get an acute case of ‘I want’ without an awareness that what they want may be out of financial reach of their parents. It is often difficult to explain to a child who has no comprehension of the value of a dollar that the what they want Mom and Dad just can’t afford. We can’t risk saying that Santa can’t get it for them.

What we can do instead is encourage them to explore the value of giving to someone else. Children learning what they live, with a daily dose of positive regard from parents and others, are well equipped to go out into the world and instill that belief in other children who may not always hear those affirming messages that they are valued.

Educating children about services like the Out of the Cold Shelter, for example, is a perfect way to bring them to an awareness about the value of being thoughtful with their words. It’s never to early to have those conversations.

Lots of children who live on the fringes because their parents are no frills, surviving hand to mouth, are not immune to having a long wish list — they’re children after all. It’s important to ensure that we are uplifting with our words, not putting so much attention on what one doesn’t have. Children being drawn in to a case of ‘I want” can actually relate to the homeless person because they know what it is to want but not always get. Explaining to them in relaxed language about what being homeless means will allow them to understand that it is something that we all should care about. Whatever we can do to provide care and comfort means a lot, with a kind word going a long way. It’s important for us to realize that the words we use to describe the homeless or any other disenfranchized group, has a lasting impact. Children need to know that there are many reasons that one is homeless and the words we use to convey our feelings about it will very often determine outcomes, especially if we take the time to have conversations with those affected by lack of an address.

Teachers in our primary and elementary schools can open dialogue about words and feelings and give children an opportunity to share what’s on their mind. As children learn more about what goes on in the world around them, in their community, they are able to formulate ideas about what their future will look like. Raising and educating community minded young people sends a powerful message that doesn’t always require words.  Actions speak louder.

Children will learn that time and attention is a two-way exchange and that we show we are worthy through our words and deeds. So, grab the kids and grandkids and get out there and show your community what you’re made of.

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

My days begin and end with magnesium

When it comes to health and wellness, I’m my own best advocate. I’d venture to say that I’m an expert in living with cerebral palsy and how aging affects the physical body challenged by this neurological disorder. How the emotional health is affected is a discussion for another time.

Because I walk the walk, I feel that I can, with a certain degree of authority, talk the talk. I know one thing for sure — medicating/sedating an uprightly mobile person such as I is the wrong approach if clinicians, doctors  and therapists charged with physiotherapy or occupational therapy intent on insuring our quality of life, want to contribute to our independent living in our own homes with minimal supports required.

For several decades I’ve researched how lifestyle, nutrition, supplementing and emotional engagement enhances our daily living. Of particular interest is how the brain, insulted by cerebral palsy is impacted by various minerals and vitamins; more specifically, magnesium, which has contributed to ease of movement, pain management, regulating heart rhythm, mental acuity, and more restful sleep.

Magnesium deficiency has long been held as the one of the most under-dignosed and therefore undertreated conditions plaguing both young and old; deficiencies have been implicated in ADHD, depression, dementia, sleep disturbance, joint/muscle pain. The list is long. Even dogs and cats can suffer from magnesium deficiency. Yes, it’s ‘a thing’.

I am not a doctor nor do I play one in the media. What I am is an aware consumer of medical/health and wellness goods and services, aging in very good health with very few prescription drugs, with only one taken regularly. And that, my friends, is what has kept me on my feet for over 65 years. Proper nutrition, exercise/movement, proper rest and lots of water do it for me.

Features of magnesium deficiency: chronic fatigue, lethargy or low energy, chronic headaches or migraines; high blood pressure; rapid or irregular heart rate; anxiety or panic attacks; lack of appetite; confusion or difficulty concentrating; mood swings; feeling irritable; twitching, tics, or restlessness; restless leg syndrome; shortness of breath; sensitivity to loud noise or light. Each of us may have a different experience with deficiency. Doing an internet search for ‘symptoms of magnesium deficiency’ and then another search for ‘benefits of magnesium’ will allow you to make decisions about whether you are deficient and whether you’d benefit from supplementing.

It’s intracellular and not serum magnesium levels that must be checked because magnesium flows between blood, the bones and inside cells. Ask your physician to order a magnesium red blood cell test (Magnesium RBC), with a repeat test after taking magnesium supplements for a few months. Keeping a journal will allow you to monitor changes in your body with regard to symptoms lessening or disappearing altogether.

My experiences with magnesium supplementing began decades ago when I started taking it to reduce muscle spasticity, fatigue and bone pain related to aging with cerebral palsy and coping with concurrent fibromyalgia and aortic insufficiency. I continue to take a therapeutic dose of magnesium — a tablet at breakfast and at bedtime. A regular dose would be once a day. Since it functions as a sleep aid/muscle relaxant, I’d recommend taking it at bedtime. As with all things, consult with your physician before undertaking any supplementing protocols. What works for me may not be appropriate for you.

In discussions with those living with chronic disease or fixed neurological condition, I always advise them to have conversations with treating physicians, especially if supplementing with magnesium may allow them to reduce or eliminate one or more pain medications, or a sleep aid, or a daily antacid preparation. Magnesium is critical to the functioning of the entire body, so if you don’t have enough, it’s not difficult to see just how many problems can pile on top of each and how you might be simply masking the symptoms with pain management drugs without ever addressing the root cause — the deficiency itself. If you have relatives, parents, children, grandchildren or others who fit the magnesium deficient profile, have a conversation with them about seeing their doctor for appropriate tests.

Magnesium may be appropriate for senior/geriatric individuals who experience mental confusion and sleeplessness; in the  clinical care setting that would be a win-win for all, as restorative sleep is critical to wellness.

Lullabye and goodnight.

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

Your attitude may be my greatest disability

(Photo: Dan Kamminga/Flickr)

        Scott Jones, a musician, educator, and activist from Nova Scotia was paralyzed 6 years ago; a victim of crime. He struggles with suicide, something that challenges so many who live with disability. Whether since birth or adult onset or somewhere in between, a disabling condition or disease will and does impact quality of life; it also impacts the lives of those around us. For those such as I living with since birth situations, the impact for significant others will be lifelong, particularly for parents, often involved in daily care for years, for decades — for life.

The degree to which that impacts emotional health cannot be measured; each person is different and each person based on their new or altered circumstance, has different coping mechanisms to get through the day. For some, suicide is never far from thought — lots of people are able to quell those feelings and keep on going, but it’s a struggle. Loss of appetite, loss of sleep, loss of interest in things once enjoyed, distancing from family, from friends. Self-imposed isolation — a personal prison.

Mr. Jones goes on to share —  “it is not my disability that causes me to consider a way out — it is the people, the buildings, the opinions and beliefs that convey to me that I do not belong in this world.”

As for me, I’ve never considered suicide because I never thought that living with challenges required ‘a way out’. I is what I is. In the strictest sense, nothing that I had was taken away from me, so I cannot miss that which I have not known. For those who come to disability later in life, whether through disease, such as Rheumatoid Arthritis, or paralysis through a diving accident, the life adjustments often seem insurmountable. One’s mental adjustment will take care of the emotional adjustment and conversations with people in your world will take care of modifying the physical environment to match new circumstances. In many ways, it’s all about perspective.

I am in agreement with Mr. Jones when he speaks about how society unintentionally disables us. The able-bodied (I hate that term!) constructs a world that is compatible with their abilities; inclusion, accessibility and barrier free public places are afterthoughts. I’m forever mindful of accessibility of public washrooms, particularly those located in restaurants. Some of them are downright scary!

The sad reality is that our society has convinced us that to have a ‘dis’ability diminishes us. No wonder we’d want to kill outselves, right? Hold on a minute! People make the mistake of pitying us because they’re at the same time feeling sorry for themselves and thinking about how they would feel in the circumstance. To not get involved keeps them at a distance from us. Keeps them safe. But does it?  Complacency is what drags us down; complacency of the very people who should know better — business people in the community in which we live. They could be far more accommodating if they gave thought to how inexpensive it is to modify a few things in their place of business. Very often, it’s a one-off upgrade that generates lots of extra business because of it. Think about that. Then take a full inventory of your business space and see what you can do to be more inclusive.

Educating yourselves about what I and others in my situation need isn’t just about me and them, it’s about you as well. 

Society needs to re-evaluate what and how they communicate to those who are ‘differently able’. Sometimes the mesage can be unintentionally excluding — like the lovely, brand spankin’ new wheelchair designated parking space in front of a restaurant that doesn’t have a ramp. Hmm! Or, if a wheelchair user is assisted into the dining establishment, imagine their dismay to find that the bathroom is unsafe and won’t meet their needs.

My thoughts often go to nursing homes and other such care facilities, thankful for my current independent living. I worry about what my life will be like in ten years,  twenty years. The systems of elder care in the ‘institutional’ setting aren’t remotely ready for the senior with since birth disabilities, particularly those with intellectual challenges. Then there are those with mobility disorders who will not fare well in nursing homes as they are currently arranged. Insufficient staff is a huge problem as well. Not lost on me is the reality that I’m one serious fall away from becoming a nursing home statistic.

It’s important to recognize that time is of the essence and that the powers that be must stop talking and walk the walk. 

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