Dispel the stigma around disability, focus on the individual and their abilities. Help gets the message to millions

Go along to the State Library of NSW, Sydney to see the Canon Shine Images exhibition on till 14th Sept ’14. Canon are shining a light on stories that matter to Australians, helping to get their message out to millions of people. Emily’s message is included – dispel the stigma around disability.

What really matters to Emily is the stigma attached to disability and wheelchairs be traded for an appreciation of the individual, wheelchair users, ability to shine. There is a story, a family, ambitions, goals and a full worthwhile life to every person with a disability. Don’t focus on the disability or the chair, focus on the person. Celebrate the achievements and diverse characters of people with disabilities.

Emily, the subject of this photo by Sharron M, says, “I study at university; volunteer at Taronga Zoo; take buses, trains and aeroplanes. I embrace social inclusion; I seek relationships, friendships, opportunities and my independence. I enjoy life.”

Thank you to Sharron for initiating this opportunity. Raising awareness within our communities and rippling out to the wider world audiences helps people with disability educate us on their ability.

Trade Stigma for SHINE!

Emily’s photo is no.6 in 23 selected photographs that reveal what really matters to Australians. See here for the 23 selected photographs or visit the exhibition at the State Library of NSW, Sydney which is on until 14th Sept ’14.

 

A wheel-ie great destination – Singapore!

Singapore was our destination for a delightful respite from Sydney’s chilly winter as; constantly warm, mostly sunny with the odd dramatic thunderstorm and accompanying bolt lightning for show. Most impressive for us is Singapore’s wheelchair friendly!

Changi, as an airport, is sheer delight. It is efficient, vast, devoid of any bustle or stress. I commented to Emily, as we passed through, that “I could live in Changi.” The arrival lounges are serene, the travelators silently whisk hordes of humanity towards their destinations with music, orchids and pumped scent, restrooms are practically sterile as brutally clean. I really feel I could drift around the concourse for an hour or two before being asked to leave by security and pushed into a waiting taxi!

As you arrive into the Marina Bay area  the architecture attracts attention; the Marina Bay Sands Hotel (pictured below) with its surf board structure atop its glassy columns, the high-rise offices and residential towers, each visage distinct and edgy. The Fullerton Hotel cements everything in place around the bay, this building was the old post office. It dwarfs the more contemporary Fullerton Bay Hotel. The smaller hotel still packs a punch with its irregular cube design, cool interiors for afternoon tea and inviting roof top cocktail bar with panoramic views. All accessible.

A gentle stroll around the Marina reveals a multitude of spectacular engineering feats.  My particular favourites are the Helix Bridge (pictured above) replicating a strand of DNA, it compliments the Science Museum (seen below) shaped as an overly large, solid, white lotus flower. Many of the building have slatted or open features that allow another intriguing view through and beyond. I love that attention to detail allowing the pedestrian to see buildings with the unique perspective from the ground up to the sky or through to the water. All can be enjoyed from  a wheelchair or from a quirky recliner on the Olympic Walk.

The MRT is rather like Changi, so enticingly clean, efficient and wheelchair friendly that I wish everywhere could replicate its accessibility. Emily and I choose our destination; Bugis, Botanical Gardens, Bayfront, Raffles, Orchard Road, Chinatown as guaranteed access, the Singapore MRT is a credit to mass transport, it works on every level. Buses are more challenging but as the MRT is so brilliant and easy Emily and I have left the Singapore Bus Service (SBS) to run without us.

Modern Singapore is wheel-ie accessible but older buildings and more traditional communities like Little India are Singapore’s Achilles. We ventured to Haji Lane (pictured below) near Bugis, all was straight forward if you ignore the annoyingly placed large green bins that block the sidewalk. Emily artfully maneuvered herself past several obstacles  and over the curb cuts that can be too acute and racy. We were finally rewarded with this little bijou lane of boutiques, restaurants and cafes.  Emily could roll along in the centre of this small pedestrian way but was hindered from entering any shop fronts by a robustly square cement storm step running the entire length of the street. She could only peer into the distant boutique frontages. We had a cup of tea in a quaint cafe, I sat at the table with a cream bottle full of flowers sipping English Breakfast tea while Emily had her beverage parked in the gutter! We had a delightful day of excitement and adventure and we take all the challenges that wheelchair users face as the spice of life.

Singaporeans  get excited about food, something we share. Restaurants and cafes offer diverse choices, all delicious even if I can’t pronounce anything correctly. The Lau Pa Sat Food Market ( pictured below) temps us with its rustic hexagonal  roof and chiming clock tower but it keeps our custom due to the tasty dishes, vast choice and cold beer. We are spoilt for choice in Singapore; from expensive to economic from street cafes to roof top venues, there is  ethnic diversity with traditional cultural favourites which adds up to hard decisions; where to go and what to eat?

 

 

 

 

 

 

 

 

Orchard Road is a given visit although I lost Emily in the maze of shopping malls so beware as we had a “Where’s Emily” at every turn as she was enticed into another shop-front or boutique! Can you spot her in the photo below? She’s there!

Singapore is a small island with a population of just over 5 million, 2 million foreign-born. It’s a major commercial hub, it hosts a busy port and an enormous financial centre but visitors don’t come for those reasons. Singapore displays diversity and multiculturalism combined with sophistication and did I mention it’s constantly warm! There is a wealth of events, exhibitions, shows and activities, something for all tastes. Whatever your reason for visiting, Singapore will not disappoint.

 

Vegetable delight for dinner at home but what healthy options are there when eating out?

Today we decided on a vegetarian curry for dinner using fresh ingredients, recipe below. Cooking healthily for Emily, and my family, is always uppermost in my mind when meal planning. I think about nutrition and calories as Emily needs lots of vitamins and minerals with only 1200 calories (5000 Kilojoules) a day. Eating enough food to provide valuable energy without excess which would lead to weight gain. Emily, as a wheelchair user, has to be more careful than others not to consume more than she requires. At home I can cook with fresh ingredients and limit processed foods, sugar and salt but what healthy options exist when we are out and about in restaurants?

Healthy choices are more difficult if we are in a restaurant but here are our tips, aided by the Dietitians Association of Australia fact sheet – Healthy Guide to Eating Out:

• If the portion size is large Emily often has the entree size for her main course. Our family often share so that dishes are in the centre of the table for everyone at the table to enjoy. One portion of fried potato chips served four of us at a recent restaurant meal.
• Dressings can be high in fat, salt and sugar. Emily and I often ask for salad dressings on the side, that way we can decide on how much our food is dressed.
• We are aware that dishes with cream, cheese or dishes with coconut milk or peanut satay sauce are going to be high in fat and kilojoules. A tomato based sauce is a better choice.
• We include vegetables with our meals , steamed, stir fried or salads (without dressing).
• We do love desert so have been known to order one sweet with five spoons. A creamy panna cotta is my favourite but I only need a mouthful so sharing is the perfect end to a delicious meal!
• Most restaurants do their best to accommodate individuals. I was always reticent to ask but our tiny nuances like salad dressing on the side or more vegetables, skim milk not regular milk in tea and coffee are all reasonable and small adjustments are not inconveniencing staff so I ask more readily nowadays.

I don’t want to give up any taste or enjoyment at meal times and by simply making healthier choices we can satisfy all our nutritional needs especially when outside the home.

The Dietitians Association of Australia and its Accredited Practising Dietician (APD) members provide science based food and nutrition advise that is tailored to your needs. See their recommendations for eating out below:

• Asian  – healthiest options are stir fried vegetables, braised meat and steamed rice.
• Bistro – healthiest options are grilled meat, steamed vegetables and plain bread.
• Indian – healthy choices are Tandoori, cucumber raita and roti.
• Italian – healthiest options are napolitana, marinara, thin crust pizza.
• Mexican – healthiest options are salsa, chilli con carne, taco, burrito, fajita, paella.
• Breakfast – healthiest options are poached eggs, spinach, tomato  and grainy bread.

Now I make healthier choices I told my husband “I can eat out more!”  My recipe below is great for a Vegetable Dinner Delight, if you are like me  – mostly home:

I took an onion, sliced, diced and fried in a little olive oil.

I added all the fresh vegetables I had in the house – broccoli, cauliflower, zucchini, potatoes, baby carrots, red pepper, french beans and tomatoes (a fruit) diced.

I added two tablespoons of good quality curry paste and stirred in a little boiling water, I wanted the sauce to thicken.

I let the vegetables simmer while I steamed some nutritious brown rice.

The carrots were still crunchy when I served the dish, absolutely delicious, fresh and healthy.

Enjoy!

We all benefit from technology; it’s just imperative for the physically challenged.

I use IT and social media everyday, so much so that I hardly think about this technology. The crux of the matter is not my use of technology; Facebook, Twitter or my blog. It’s Emily’s use of technology which is when science, the evolution of the computer/ipad and the rapid development of assistive commodities show a major impact.

Emily’s injury has altered her life’s course and she has had to become more cerebral than physical. She returned to University to retrain into a role that accommodates her physical abilities. She learns via online lectures, she records her notes with swipes and touches on an ipad screen, she has voice recognition when writing on the computer. She has C-bus wiring to open doors in the home. Lights and heaters are on timers so that her environment is controlled without any need for daily commands. Improvements in technology allow Emily to interact in society at a heightened level in comparison to some decades past. A new age approaches when robotic technology may even have her on her feet?

I have set up google searches so that I am alerted daily to articles published on the WWW which include key words like spinal cord injury (SCI). The publications that I access inform me of SCI news around the globe. I am aware that teams are developing epidural stimulation therapy (see here), that Exoskeletons have become available in the USA (see here ) and that Hong Kong has an advanced research team led by Dr Wise which involves stem cells (see here). This is impactual life changing technology, research and development on this level has the eyes of the world watching, we’re listening; all waiting with hope.  Research and development in technologies have initiated change, change in the approach to SCI care, change that’s pushed for better SCI rehabilitation and the hope of a future liberated from the continual use of a wheelchair.

I feel very humble with my primitive use of IT and social media. I developed my Everydaycaring blog as a forum to resonate with others. I highlight there is a fine balance between sitting in front of a screen and typing vs getting outside to socialize with an actual friend, hot beverage and scrummy muffin! The muffin sways me and I’m out of the house and up the road to the nearest cafe to meet friends. Social media is a great opportunity to connect, especially for many in isolated communities or for those that are housebound. Facebook keeps us all in touch with family and friends. I am just mindful that interacting with people who are actually present benefits my psyche and can not be replaced by Twitter, Facebook and WhatsApp. It might appear that my comments are contradictory as a blogger, as I post on Facebook @Everydaycaring and I tweet on Twitter #Everydaycaring but I hope my message is always clear; I advocate that we all need to engage in activities outside the home so that there is some real respite and tangible interaction in our day, week, month, that goes for me and Emily.

As I reflect on my and Emily’s use of technology it’s obvious we have vastly different needs. I use IT to communicate and share, I aim to strike a chord with others so there is a unity of everyday caring.  Technology is a marvelous resource and welcomed by all not just the physically challenged BUT it is the continued development of medical, social and physical assistive technology that is fundamentally imperative for the physically challenged. Technologies impact in the SCI arena is immeasurable, not only in it’s practical application but in the hope it instills.

See Carers NSW for further resources for carers

See SCIA for news on SCI research

See Spinalcure for more news on SCI research.

See Spinalnetwork for news on work towards a SCI cure. Also on 13th October Spinalnetwork host Connections 2014 at Royal Randwick Racecourse in Sydney. Connections 2014 brings together researchers, clinicians, decision-makers and the community in a single interactive forum to discuss spinal cord injury research Down Under. As well as some of our best and brightest home grown experts, we will welcome two leading international speakers including Dr Kim Anderson from the Miami Project to Cure Paralysis.

Delighted to see Emily as a face on Spinalnetwork’s website. We are looking forward to  Connections 2014, see you there!

Trade stigma for shine result! Removing stigma around disability.

Canon asked people around Australia to submit photos of something that mattered to them, and the results are both beautiful and revealing. Emily’s photo is no.6 in 23 selected photographs that reveal what really matters to Australians.

Emily, the subject of this photo by Sharron M, says, “I study at university; volunteer at Taronga Zoo; take buses, trains and aeroplanes. I embrace social inclusion; I seek relationships, friendships, opportunities and my independence. I enjoy life.”

What really matters to Emily is the stigma attached to disability and wheelchairs be traded for an appreciation of the individual, wheelchair users, ability to shine. There is a story, a family, ambitions, goals and a full worthwhile life to every person with a disability. Don’t focus on the disability or the chair, focus on the person. Celebrate the achievements and diverse characters of people with disabilities.

Thank you to Sharron for initiating this opportunity. Raising awareness within our communities and rippling out to the wider world audiences helps people with disability educate us on their ability.

Trade Stigma for SHINE!

See here for the 23 selected photographs

 

Being resolved to manage requires mental determination and strength and maybe a journal?

This week I reflected on another year past, another year older and I happened to read my own journal. Very early in Emily’s acute trauma phase I was advised to give the page my worries. Write down my thoughts, unload my anxieties into a journal. I then close the journal on that days scribed sentiments; having acknowledged the thoughts I release myself from their grasp.  By writing down any circulating concerns my thinking was documented, defined and distilled which helped halt particularly emotional vexations. Penning everything into my journal allowed me to reflect on my thoughts validity. Some of my scribblings were transient fears which resolved quickly. Other fears may never be rectified but at least I acknowledge them and can rest alongside that realisation and start the process of acceptance.

Writing can be therapeutic, mine can be jumbled especially at times of stress or when situations and decisions are overwhelming but I look back and I can read my resolve to manage; to cope.  Re-reading where I have been is an important part of my journal. The realization that I have come through periods of acute stress, survived challenging demands and as Elton John sings “I’m still standing better than I ever did“.

Being resolved to manage has an element of endurance woven between each letter and word. On occasions I feel disheartened and de-skilled. At times I feel unfulfilled when I spend my day, week wrapped up in service provision. It is fair to say that I seek to affirm the value in what I do. Standing beside Emily as an everyday carer is an invisible role to many onlookers and maintaining my rigorous approach and selflessness is difficult at times. Life isn’t full of reward and glory so keeping up and carrying on needs self motivation and that requires oodles of mental determination and strength.

I re-read my journal and was surprised how many times I repeated “I’m resolved to manage.” It acted as a practical mantra, it has had an effect on me as I realised that to manage I had to be resolved to manage. That mantra is as important today as it was in 2012 and I will no doubt reflect on this often repeated phrase sometime in my unknown future. My resolve to manage has served me well to date and my journal is worth a read from time to time!

Another year past! Cheers!

Educate the young about disability to reduce stigma, prejudice and discrimination.

In my everyday caring role I investigate the world-wide-web for information and news relating to anything that empowers, enlightens and educates Emily or myself. Today I read that the National Spinal Cord Injury Association, will gather in Washington, D.C. for Roll on Capitol Hill to shape policies that impact the health, independence and quality of life of people living with spinal cord injuries and disorders. My interest was piqued and I wanted to read their agenda. Listed below are the issues to be discussed:

• Ensuring increased medical access
• Expanding home and community-based services and supports
• Improving access for housing modifications
• Providing accessible transportation for all
• Increasing employment opportunities for people with disabilities
• Ensuring civil rights protections

I applaud all the points above and support discussion on all levels so that legislation, guidelines and policies are developed that service the disabled in society, ensuring their empowerment and inclusion. But I have an idea; if children are educated about disability in school maybe they would grow up to be more considerate, maybe they would grow up to naturally incorporate the needs of people with disabilities into their businesses, incorporate the needs of the disabled and carers into workforce guidelines and training, maybe foster respect for the disabled and their carers within society?

The younger that children are exposed to disability the more normal it appears to them. A lovely example of this was when Emily was in Royal North Shore Hospital (RNSH) a girlfriend visited with a little boy she was looking after for the day. This mini man was wary of Emily and shied away until he had completely reassured himself that Emily’s wheelchair wasn’t scary. When it was time to leave he sat on Emily’s lap for a cuddle which brought an emotional tear as a meaningful moment for all present.  Our friend returned with her charge some days later, he played happily with his dinosaur on the grass quadrangle outside RNSH, bathed in warm sunshine. After a lengthy natter, it was decided we would move indoors for a cup of thirst quenching tea. This small lad jumped up excitedly at the prospect of a treat and ran ahead calling out “Come on Emily, come on Emily!” as she was slower pushing her chair than his little running legs! Exposure to wheelchair users is the simplest way of educating communities and society, exposure reveals people with disabilities are real people living real lives, able and confident, funny and curious, interesting, studious, frivolous, musical.  Disabled people are beautiful and strong, brave and intelligent; just like the rest of the population. It isn’t difficult to see this but you have to be looking and some people need to be shown.

Schools need to promote disability awareness and ability within disability. Education would help eliminate prejudice and discrimination as future generations become more informed and inclusive, aiding change; change in children’s developing values.  Helping to reduce the stigma of wheelchairs and the disabled, instilling a positive attitude to this minority group.

June 10th  – The students from Harrison’s S.J. Preston Elementary School recently participated in the first Disability Awareness Day. All of Preston’s students had the opportunity to experience visual, fine-motor, and physical impairments through numerous activities. See here 

The Guardian, April 13th – Nothing is more important than teaching compassion. Teaching schoolchildren happiness, empathy, altruism and compassion has proven beneficial results for classroom learning as a whole. See here

The stigma of wheelchair use decreases with awareness and education. The wheelchair user’s opportunities are increasing when prejudice and discrimination are reduced by enlightenment.