Are we going colour blind? … (#Autoimmune #Chronicillness #Disability)

image

There are now so many ribbons for so many different diseases that I have to confess, I think I am going color blind!!! Everyday, everywhere we go there is someone wearing or selling ribbons. I don’t even know what half of them mean anymore! Even for my own illnesses / diseases! Which begs the question… are they really working at raising awareness for the diseases or illnesses which they were intended to support? Are we educating the world or even ourselves? Do we feel a greater sense of pride, community or respect when we done those little pieces of ribbon?

When veterans gather together and dress in their uniforms, the world is reminded of the sacrifice and bravery of those who serve and still serve. It’s visible. It’s recognizable. It’s respected. Its even a public holiday in many parts of the world. It is a time honoured tradition which still means a lot to those who have been affected by war/s and have lost loved ones. I regard these days as being successful in that, at the very least, people know what the day is dedicated to. Same as many other religious festivals and holidays throughout the world. There doesn’t seem to be much doubt about what is being celebrated and remembered; even if you aren’t a mother yourself, you still know a mother, had a mother or can appreciate the role that mother have in society.

Sometimes a public figure will step forward and become the ‘face’ of an illness or disease or cause/movement and we can be made aware or become informed through our respect for the celebrity. i.e. Stephen Hawking (ALS) Micheal J Fox (Parkinsons), Nelson Mandela (Apartheid), Germaine Greer (Feminism), Martin Luther King (Civil rights). We empathize and connect because they are people and we can connect with people.

It doesn’t even need to be a person to promote a cause or movement! Animal rights and animal cruelty  organizations (RSPCA, WWF etc) can stir the emotions and empathy of even the most cold hearted person when we see a baby gorilla being nursed or a lion cub being released back into the wild . I regularly donate any loose change I can to animal causes. How could anyone not care about animal cruelty is beyond comprehension? But are these the limits of our compassion and kindness?

Invisible Illnesses, Autoimmune diseases and some disabilities do NOT enjoy the same level of respect and no amount of ribbons seems to helping  to change things. There are very few TV ads, movies, books, commercials, documentaries, hallmark cards, superheroes, fundraising drives, songs or news reports dedicated to the plight of chronic illnesses, autoimmune sufferers or disabilities, even though we represent a huge percentage of the overall population!!! Even the sufferers themselves don’t get the level of information, guidance, follow up and support that they need to properly cope.

People seem to care far more about many other issues or causes before they will educate themselves on the struggles and challenges facing the chronically ill, even though there are currently no cures and sufferers can battle their entire lives with terrible pain, physical impairment and social isolation (and suspicion). People are far more concerned about the risk of the Ebola virus and a zombie apocalypse than the suffering and care shown for those battling life long diseases and autoimmune illnesses. Although in the US alone, one in six people suffer from an incurable Autoimmune disease (AARDA). One in two Americans have a chronic illness and Invisible illness (http://invisibleillnessweek.com/media-toolkit/statistics/). These numbers far outweigh cancer statistics, Ebola statistics, Parkinsons statistics and almost any other group today! So why doesn’t anyone care? Its the question that constantly haunts every sufferer all over the world.

Is it because we look like everyone else? … So do cancer sufferers! Is it because we aren’t ALL in wheelchairs? … AIDS sufferers aren’t! Is it because you cant see our pain?… You cant ‘see’ Alzheimer’s either! Is it because its not immediately recognizable like race, gender or height?… Does that REALLY matter? The facts are that very few people want to show empathy or recognize the suffering of these groups and find it much easier to label them as ‘unreliable’, ‘attention seekers’, ‘malingerers’, ‘high maintenance’, ‘too hard’, ‘needy’, ‘mentally unstable’, and the excuses go on…

I will admit that it must be very hard to try and understand a situation where one day you get sick and you can stay sick for the rest of your life and never ‘recover’. Even harder when these illness ebb and wane, relapse and flare. It is like trying to understand the seemingly limitless boundaries of the universe or imagining going to prison for life for a crime you didn’t commit, they are concepts and notions that are beyond the limits of understanding, experience and compassion of the basic human being. I personally know people who would rather marry an abusive alcoholic than entertain the thought of entering a relationship with someone with a chronic illness!!! That fact still staggers belief!

Part of the blame must fall upon our own shoulders too; here is why. During the civil rights demonstrations when people of color refused to ‘sit at the back of the bus’ or be turned away, or not be given the respect they deserved, it took self confidence, perseverance, rallies, marches, protests, and the deep and abiding belief that as human beings we are worthy of the same respect and dignity, and we will accept nothing less! Although I am not saying we start a physical protest and marching on houses of parliament, what I am trying to install the notion that we have to be prepared to endorse ourselves, validate ourselves, and be prepared to combine in a unified voice. If we took the attitude of validation and respect, as a group (a very large group indeed) and stood up for ourselves, believed in ourselves and showed able bodied and healthy people we are NOT going to be pushed aside, demeaned and forced to hide away in our homes, we could make a big difference how we feature in the minds of the rest of the world and the medical community. I really don’t care if society / media / governments / health practitioners / employers think we are in the ‘too hard’ basket because of the nature of our diseases and illnesses. Its up to us to educate and advocate for ourselves so that they will have to accept that we are here and we are not ashamed of who we are and the bravery and courage we show every day of our lives. The support of our loved ones, carers and supporters should also be asked to help as well. Hold those heads up high! We have done NOTHING wrong!

…And back to my original point; are the ribbons working? Its my opinion that they are not as effective as a united group of people, dedicated and committed to advocating, believing, spreading our message, telling our stories and advocating for ourselves AND doing so with the courage of a Mandela, the devotion of Martin Luther King and the love of a Mother Lion to her cubs.  After all… “We have nothing to lose but our chains…” [Carl Marx]

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s