Thursday, 28 July 2016

Shouldn’t We Rethink Normal?

By: Renée Cormier


I recently came across a post on beBee.com where the writer spoke of growing up in a world where he was not considered normal. As someone who has never wanted to be just like everyone else, I can honestly say that I understood what it is like to be different, but I have never felt like my idiosyncrasies made me abnormal.

My son, who lives with a mild form of autism put together a short documentary where he questions the value and definition of normal. He feels perfectly normal, and why shouldn’t he, really? Normal is really a term that is used by ableists to describe anything that doesn’t fit their perception of what is right and good. It takes all kinds of people to make the world go around, so why would anyone not be considered right or good at their core?

It is my personal belief that each of us is on this earth to teach someone something. Whether or not you can speak, or even move has no bearing on your ability to do that. The fact is, that every interaction we have, whether we are aware of it or not, is an opportunity to teach someone something. I would venture to say that most of us do it all the time and don’t even know it. It is our individual differences that provide these teachable moments and have the power to bring us together with more understanding. I like to think that it is our differences rather than our sameness that creates the strongest social glue.

The collective consciousness of the world has always been very negative because people tend to see differences as a threat. Clearly, the world has much to learn about the value of being different. Those who are willing to bear the pain of being different are blessed with having the opportunity to innovate, educate and change the world. They are the leaders, the visionaries, the philosophers and the greatest influencers.


It’s time to embrace what makes you different and love that quality in yourself. Normal is only a word and when we say someone is not normal we shouldn’t think of it as a bad thing. We tend to think of abnormalities as being reflective of an ineptitude, but it doesn’t have to mean that at all. Our personal abnormalities whether they be physical or mental force us to navigate the world in unconventional ways and in doing so we learn and teach more. In essence, we fulfill our purpose. 


Monday, 11 July 2016

A Bigger Issue

By: Sarah Evans

Last week there was a lot of controversy around the Canadian National Exhibition (The CNE). On Tuesday, the CNE decided to cancel it's policy of allowing free admission to people with disabilities. There was such a big outcry that the CNE reversed this decision on Thursday. I am not really a fan of the CNE, but I do have some thoughts about this issue.

The other night, I was listening to a discussion about this on the radio. The host thought the CNE should be free for people with disabilities, saying that they can't enjoy the rides, one of a number of luxuries that they can't enjoy in life. I felt patronized by this comment. Anyway, it's incorrect. Some people with disabilities can go on rides. Besides, many people who go to the CNE don't go for the rides - they go for other things like the food or shopping.

I have mixed feelings about the CNE giving free admission to people with disabilities. I think that it would be ideal for people with disabilities to pay full admission to the CNE and all other attractions. I think it would go a long way towards equality. Unfortunately, many people with disabilities don't have much disposable income. Their sole income is from ODSP and they struggle to afford the basics.

So while we talk about whether people with disabilities should get free admission to attractions, maybe we should really be talking about how to raise the average living wage for people with disabilities so they will have enough disposable income to enjoy going to places like the CNE.

Monday, 30 May 2016

It's Not Either, Or

 By: Sarah Evans


I have a physical disability and a mental health issue. I am an advocate for both. One of the first things people want to know is whether my mental health issues are caused by my Cerebral Palsy. It is interesting how we are always tempted to silo issues.

When I started advocating for mental health issues, I was adamant in telling people my mental health issues were not caused by my disability. I didn't want to make mental health another part of my disability. I thought this would further ostracize people with disabilities in the mental health community.

Now I am not so sure the issues are separate. My mental health issues may not be directly caused by my Cerebral Palsy, but they definitely factor in. Sometimes I feel very isolated. I volunteer from home and sometimes it is hard to go out. I get tired easily at night. Many places are, unfortunately, not accessible. I may find an event online I would like to go to only to find out there are stairs or the washroom can't fit a wheelchair. Sometimes, when I am not sure if the venue is accessible, I could call or email to ask, but I am afraid they will say they aren't accessible or I just feel blah and I don't want to put out the effort. I know that feeling is part of the discouragement and depression. It's a downward spiral.

When a person with a disability has a secondary health concern, its not a matter of one being the cause of the other. It's impossible to tell where one ends and the other begins. We have to see the whole person with both joys and challenges.

By the way, this is a really interesting study about mood disorders in Canada. It speaks to the prevalence of different mental health issues among various groups of people. Sadly, people with physical disabilities aren't even mentioned. That is very telling, actually. We are so often an ignored demographic. 




Monday, 2 May 2016

Mindful parenting: How paying attention to your own thoughts can help you pay attention to your child


By: Jennifer L. Gibson, PharmD

Mindfulness is critical for personal well-being. Mindfulness is essentially a moment-by-moment awareness of thoughts, feelings, and sensations. By committing to this focus on the present, people can reduce stress and improve health. Mindfulness is usually an inward-focused practice, concerning an individual and his or her own self-awareness. Now, however, attention is being focused on mindfulness in parenting and, more specifically, mindful parenting for parents who have children with disabilities.

Mindfulness involves purposefully paying attention to how we feel and what we think, but without judgment or criticism. We tune our thoughts to the present moment and ignore calls to the past or imaginations of the future. Mindfulness is often developed through meditation, but even being mindful during simple, mundane tasks (like washing the dishes) can reduce stress and improve positive feelings.

Parents of children with disabilities face increased risks for acute and chronic stress, and many physical and psychological variables affect parenting decisions and behaviors. A parenting couple’s relationship is also strained when a child has disabilities. These stresses can be mitigated with mindfulness, and mindfulness can promote positive outcomes for the child and strengthen all familial relationships. Not surprisingly, parents who focus on such present-centered attention are more involved in the care and support of their children. Parents who practice mindfulness in caregiving also report greater satisfaction with parenting, more social interactions with their children, and lower levels of stress.

Mindful parenting does not only affect parents, though. Parents who mindfully attend to the care of their children with disabilities improve the lives and health of the children. Mindfulness of parents who are caring for their own children with disabilities leads to greater happiness for the children. Mindful parenting also reduces aggression and increases social behavior in children with disabilities, including developmental and intellectual disabilities. Additionally, children whose parents practice mindfulness have increased positive and decreased negative interactions with their siblings.
Mindfulness training and interventions might help prepare parents for delivering the necessary care to their children. Whether you practice formal mindfulness, simply set aside a few minutes a day to calm and quiet your mind, or commit to paying attention to yourself on purpose throughout your day, mindfulness may be a path to transforming how you care for your child. Teaching your mind to ignore distractions and focus on your thoughts and feelings can be difficult – especially for tired, overworked, multi-tasking parents – but what is better to focus on than caring for your child?

References
Bluth K, Roberson PN, Billen RM, Sams JM. A stress model for couples parenting children with autism spectrum disorders and the introduction of a mindfulness intervention. J Fam Theory Rev. 2013;5(3):194-213.
Harper SK, Webb TL, Rayner K. The effectiveness of mindfulness-based interventions for supporting people with intellectual disabilities: a narrative review. Behav Modif. 2013;37(3):431-53.
MacDonald EE, Hastings RP. Mindful parenting and care involvement of fathers of children with intellectual disabilities. J Child Fam Stud. 2008.
McConachie DA, McKenzie K, Morris PG, Walley RM. Acceptance and mindfulness-based stress management for support staff caring for individuals with intellectual disabilities. Res Dev Disabil. 2014;35(6):1216-27.
Parent J, McKee LG, Anton M, et al. Mindfulness in parenting and coparenting. Mindfulness (N.Y.). 2016;7(2):504-13.
Singh NN, Lancioni GE, Karazsia BT, Myers RE. Caregiver training in mindfulness-based positive behavior supports (MBPBS): effects on caregivers and adults with intellectual and developmental disabilities. Front Psychol. 2016;7:98.
Singh NN, Lancioni GE, Winton AS, et al. Mindful caregiving increases happiness among individuals with profound multiple disabilities. Res Dev Disabil. 2004;25(2):207-18.
Singh NN, Lancioni GE, Winton AS, et al. Minful parenting decreases aggression and increases social behavior in children with developmental disabilities. Behav Modif. 2007;31(6):749-71.


Jennifer Gibson is a pharmacist and medical communicator. Dr. Gibson trained as a hospital pharmacist specializing in internal medicine and acute care, and, in this role, helped to implement patient safety initiatives and investigate medication errors and adverse drug reactions in hospital settings. She evaluates and consults on clinical performance and risk reduction in the health care industry and in other high-reliability organizations, and she regularly presents medication and patient safety education and training sessions for health care professionals, as well as parents, children, and caregivers. Find out more about Dr. Gibson at ExcaliburScientific.com.

Friday, 22 April 2016

Caring for patients with disabilities: room for improvement in health care education

By: Jennifer L. Gibson, PharmD

Caring for patients with disabilities: room for improvement in health care education
By: Jennifer L. Gibson, PharmD

As a health care professional, I have interacted with patients of all ages, stages, and abilities. Most of what I learned during my formal education, however, focused on relatively healthy adults. I quickly learned, once I entered practice, that the one-size-fits-almost-all approach to my training did not apply to the real world. Only because of a lifetime of personal experiences with children and adults with disabilities did I have any framework for caring for patients that had anything other than typical medical needs. One “size” definitely does not fit all when it comes to professionalism and caring for patients – all patients – and I wonder where medical training and education can improve to provide the best possible care to patients and most effective support to caregivers.

Families of individuals with disabilities require emotional, informational, and practical support. Parents, especially, want health care professionals to listen to them, educate them, acknowledge their experiences and emotions, and direct them towards resources that can assist them. How and when this support is provided affects service utilization, facilitates understanding of care-giving roles, and addresses feelings of stigma and isolation.

Are health care providers as accessible and supportive as we can be? Of course, there are legal obligations for allowing physical access to medical offices and facilities, but are health care personnel equipped to accommodate the emotional and social well-being of patients and their families? Barriers to proper health care include insufficient time with the health care provider or staff, unclear or incomplete communication between provider and patient and caregivers, and inadequate provider knowledge of disabling conditions.

Overall, patients with disabilities have higher risks of many chronic health conditions, but they receive fewer preventive services and are in poorer health than individuals without disabilities. Children, youth, and adults with disabilities experience disparities in many key indicators of health, and the problem will continue to get worse without access to proper care (and care providers).
Health care providers have responsibilities to understand the laws and regulations that protect and help people with disabilities, identify proper equipment and services, and recognize and mitigate barriers to care and support – not only for the patient, but also for the family and caregivers. Many health care providers, though, have their own barriers to providing care to people with disabilities, including physical barriers (e.g., offices and equipment that cannot accommodate physical, cognitive, or sensory needs), attitudinal barriers (e.g., additional time spent with patients is viewed as a burden), expertise-related barriers (e.g., not having sufficient training or education with complex needs associated with some disabilities), and systemic barriers (e.g., inconsistent and maldistribution of health care services and resources). These barriers can prevent patients from receiving care, not just delay or inconvenience it.

Unfortunately, negative attitudes of health care providers toward patients with disabilities mirror the attitudes of the general public, which deter care and create obstacles for people with disabilities. Health care providers also tend to view a disability as an “illness” – an acute condition that requires a curative response. This view perpetuates the disempowerment of people who are already facing more challenges than average people.

Health care professionals need to recognize the educational opportunities that patients with disabilities can offer. In addition to specific issues or conditions that require medical attention, treating people with disabilities also offers chances to review assumptions made by the professional about overall health and wellness for all patients. New, longitudinal curriculum is needed to teach students in health care education to care for people with disabilities and their families. Training should be coordinated among communities and health care settings and should comprise input and experiences from current professionals, as well as patients with disabilities and their family members. All health care professionals should enter practice with the expertise, consideration, and compassion – and passion – for providing equitable, accessible, quality care for all patients.

References:
Howe EG. Professionalism: one size foes not fit all. J Clin Ethics. 2015;26(1):3-15.
Taggart L, Truesdale-Kennedy M, Ryan A, McConkey R. Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. J Intellect Disabil. 2012 Sep;16(3):217-34.
Frye L. Fathers' experience with autism spectrum disorder: nursing implications. J Pediatr Health Care. 2015.
Blanche EI, Diaz J, Barretto T, Cermak SA. Caregiving experiences of Latino families with children with autism spectrum disorder. Am J Occup Ther. 2015;69(5):1-11.
People with disabilities: What healthcare professionals can do to be accessible. Centers for Disease Control and Prevention. 2013.
McColl MA, Forster D, Shortt SED, et al. Physician experiences providing primary care to people with disabilities. Healthc Policy. 2008;4(1):e129-47.
Symons AB, Morley CP, McGuigan D, Akl EA. A curriculum on care for people with disabilities: effects on medical student self-reported attitudes and comfort level. Disabil Health J. 2014;7(1):88-95.
Satchidanand N, Gunukula SK, Lam WY, et al. Attitudes of healthcare students and professionals toward patients with physical disability: a systematic review. Am J Phys Med Rehabil. 2012;91(6):533-45.

Jennifer Gibson is a pharmacist and medical communicator. Dr. Gibson trained as a hospital pharmacist specializing in internal medicine and acute care, and, in this role, helped to implement patient safety initiatives and investigate medication errors and adverse drug reactions in hospital settings. She evaluates and consults on clinical performance and risk reduction in the health care industry and in other high-reliability organizations, and she regularly presents medication and patient safety education and training sessions for health care professionals, as well as parents, children, and caregivers. Find out more about Dr. Gibson at ExcaliburScientific.com.


Tuesday, 16 February 2016

Living with OCD


 By:  Zach MacLean-Szwaz

Mental illness and/or addiction is something that affects approximately 1 in 5 Canadians in any given year. Although we are taught to be compassionate towards these individuals, there is still plenty of prejudice and ignorance in terms of the view of the lives these people live. Myself, I suffer from OCD. It first made its presence known in grade 4, making it even harder to understand. The things I had enjoyed, became dirty”. The things that were dirty, became an area of avoidance at all costs. 

I remember the first moment I was made aware something was amiss. It wasn’t my parents or a health care professional, but a student, the same age as me. She asked me why I kept spitting in my hands. To me, this was my form of making my hands clean if I had touched something I perceived to be dirty”. Before this moment, I believed nothing was unordinary, but as I sat at my desk, being asked by a 9 year old for an explanation I could not give, it clicked that I wasn’t like the rest. My brain fired differently, sending out thoughts and feelings that the other kids weren’t experiencing. I began to notice more and more my actions. From jumping around spots on the ground, to avoiding contact with feathers, to washing my hands until they were red, raw, cracked and bleeding.

It’s truly a feeling I will never forget, losing contact and being distanced by misunderstanding. Being made fun of for something, I wasn’t given the proper tools, in order to manage the irrationality of it all. I trucked on, with nobody but my parents by my side and it’s to them I owe my life to. They brought me to the weekly CBT (cognitive behavioural therapy) sessions and they helped accommodate my needs as I made progress towards coping with it. They took the negativity I received and made me feel just like everyone else. Eventually after about 7 years of weekly sessions, I was symptom free, under control and able to be me again without.

Years went by and I found myself being a third year student, in University with a solid support group of friends, family, girlfriend and extra-curricular activities. Everything was smooth and then in the matter of a month it all went downhill. OCD sometimes is triggered through stress, traumatic events or even small things like maybe remembering a past thought (depending if you've had it before). For me, I was dealing with a change in family dynamic and the stress of it all began presenting symptoms. I ignored it is because I was in denial, I wanted to believe that it wasn't making a return but because of my negligence, it had become 10 times worse than it was as a child. 

I was couch ridden, unable to open doors and light switches, I was dodging and weaving, showering for extended periods of time because something that was dirty” grazed my leg, so I needed to wash my whole body. It took until I was fully unable to function where I found myself in the Emergency Room at Credit Valley Hospital. They wanted to evaluate my health and I passed out merely from taking blood. I was weak and physically and mentally drained. They suggested hospitalization until I could regain some strength. I refused because I was (and still am) very stubborn. So they prescribed some medications, to take some of the edge off and on my decision, left to the comfort of my home. It took about a month before the actual results began to appear. I was much calmer, washing my hands less, I was given back rationality. Although the improvement, I still wasn’t at a point where I felt I could be in public. I wasn’t working and decided the stress of school was too much to handle. I took time to rebuild and regain myself and despite my disinterest to do so, it helped me more than I could have predicted.

Now, 2015 going into 2016, I’m in school, I’m feeling good and the OCD is lessened. I have my bad days and good days but with the help of medication each day makes me stronger, making me push forward towards becoming symptom free once again. My support system still remains and what I attribute a lot of my success to. They became a reason to get better when things seemed so bleak. Provided me with comfort when I felt so alone, gave me an outlet to express my thoughts.

The point of all this is not to have people feel sympathy towards what I went through. It is to show that mental illness is strong and prevalent everywhere we step. It is something that should be handled more seriously but delicately enough that people will want to confide in a support system. While you walk down the hallways of the school, look around. You don't know what people have going on, you don't know what they are feeling. We individuals are all around, most of us disguising our true colours. Some others don't have the ability to do so, but we are here and we are human just like everyone else. Sure, we are a bit different but who doesn’t have a quirk or two. To all my fellow people who deal with mental illness and to all those who don’t, we are all human beings under one roof. Let’s make sure everyone can have some shelter.


Friday, 12 February 2016

Doing What Works


By: Sarah Evans

All my life, I have liked to hand write. I used to get into arguments with my mother and teachers (I tell you this with a smile on my face) over me writing. My handwriting is big and messy and difficult to read. I understand why people thought it would be easier for me and others if I typed instead of wrote, but I was still stubborn at times.

It wasn't until years later when I didn't have easy access to a computer that  I began to hand write again. I really liked it. What I realized is that for me,  handwriting was less an issue of my being stubborn and more about it being easier for me to do my work. It feels like information flows more easily when I write. Somehow, my brain processes information differently. As well, I am a tactile person. I am more focused and engaged in what I am doing when I am writing or doing something meaningful with my hands. I even have an app on my iPad that converts my handwriting into text.

I have learned to do what works. Even though it takes me longer to hand write, it helps me to think more clearly and gives me more confidence in my work.

Friday, 5 February 2016

Friends Help to Deal with Bullying

 By: Sarah Evans

I was asked to write about my experience with bullying and honestly, I am not exactly sure what to write. I was bullied a bit in elementary school, but in some ways it doesn't seem so bad. Not that it was right, but it didn't seem mean-spirited. For example, one time a girl who was younger than I was made a hurtful comment to me. I don't remember what the comment was, but she did apologize and she said she didn't know that I had feelings because I had a disability. We were both young at the time and we were friends, so I see this as more of an educational opportunity than anything else.

One incident that sticks out in my mind happened one day when I was eating in the food court at a mall. My disability makes it difficult for me to feed myself, and sometimes it can get messy. There were a couple of boys at the table next to me and they were pointing at me and laughing and making comments about how gross it was. This may not have been traditional bullying, but it really hurt my feelings. I remembered that the next day I was going to an event with friends. Thinking about that helped me to get through the incident.

Unfortunately, bullying is real and it does hurt. But focusing on friends who care about you and other positive things will help us to remember that we are valued and important. 

Friday, 22 January 2016

More Than Role Models

By: Sarah Evans

The other day I saw an article online about the first line of dolls with disabilities.  They are made by British toy maker Makies. The dolls can be customized and come with accessories such as hearing aids, canes and facial birthmarks.

People are going to have different reasons for liking these dolls. Some would say that kids with disabilities are going to like playing with dolls that they can relate to and see themselves reflected in. Other people say that the dolls will help kids with disabilities feel "normal" or that it is good that toy companies are reflecting diversity.

While all these things are true, I think that we need to go further. I wonder if the millions of kids without disabilities would want to play with these dolls. Is this just going to be a disability thing or is this going to do anything to educate people (kids especially) about disability issues.


I think these dolls are a good start and they can be a great advocacy tool. For toys to be truly inclusive, they need to be available to all kids and be seen; not as segregated and special, but rather as a fun toy. 

Monday, 18 January 2016

Living Mindfully

By: Sarah Evans

Improving health is a goal  many of us try to achieve as part of our New Years resolutions. Most people focus on improving their physical health, but looking after our mental health can also help us achieve better physical health. Did you know that mindfulness can help us both mentally and physically?

Being mindful means living in the present and focusing on the moment. When you are able to master mindfulness, you automatically reduce stress and the physical and emotional complications it causes. This is something that I struggle with. My mind is constantly wandering. I always have to keep my mind occupied or else it goes off in a million different directions.This can be very frustrating. I end up dwelling on things I don't really want to think about and I am not paying attention to what I am doing. Sometimes it takes me a while to re-focus my attention.

Meditation is a popular way to help improve our ability to be aware of how we are affected by our surroundings, feelings and emotions. It also helps to have something to focus on, like an interesting activity or pleasant music. I know that mindfulness will lead to more peace and health in the end. Personally, I feel better when I am paying attention to what I am doing. I feel calmer mentally and I am more confident. It is not easy to be mindful, but there are many resources available online to help you get started on a healthier way of interpreting the world around you.

Visit the following links to learn more about mindfulness.




Tuesday, 5 January 2016

Getting Healthy in the New Year

By: Sarah Evans

Happy New Year. It seems like most people resolve to get healthier when the new year starts. People talk about eating properly and working out, but there are a number of other areas in our lives where we can get healthy.

One of those areas is our social lives. How you prioritize your social life can seriously impact your mental health. I plan to work on being more socially active this year. Believe me, it is easy for me to make excuses to stay home. Sometimes I tell myself that I am too tired to go out or that going out would be too difficult for me to organize (having to take into account my attendant care, transportation and issues of accessibility). The thing is, I know that I feel better when I go out.

Perhaps the key is to think of things you like to do and use them to put some purpose into your day. I like to go to in the library to find games and activities. This gives me a chance to do something fun and meet new people. Even if I just go to the library to do my work, I feel better just being around people.


Your mental health is as important as your physical health. Don't just make a new year's resolution. We all forget them because they quickly stop being important to us. Instead, understand that looking after your mental health affects everything else in your life and commit to making a lifestyle change that you can work toward, little by little.