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It has been two and a half years since our mother died and nearly six years for our father.

Life has a new rhythm that now feels regular. We stumble along with happy faces. Our garden is tidy, the kale is growing neatly in a row. Our house waffles between being perfectly clean and total chaos. After breakfast, the cats are curled up in their respective beds. We made it through the eye of the storm and have resumed our lives as they once were. Sort of.

Yes the storm has passed but it has left something behind, a beast of darkness and tears. It lurks in the shadows of holidays, memories, songs, sights, tastes and smells. It descends on us like a weight and hangs in our doorways.

Sometimes when the beast appears I manage to beat it back by monkeying around in the kitchen, all of us dancing to top hits from the 90s. The cat resenting being selected as dance partner for Personal Jesus, yet again. Food also beats it back, sweet cakes and breads that fill the house with soothing smells.

This beast is not mine, it belongs to my brother but it feels like mine in the fight to push it back into the shadows.

Persistent grief for the passing of our parents defines my brother’s beast. I thought it was just a visitor but now I am sure it is here to stay.

My brother relives the passing of our parents often and in real-time. It is not a faded memory of the funeral or of days gone by, it is the agonizing moment-by-moment events leading to their passing that he remembers and revisits. The emotions are as raw as if it was on that very day.  He has no mechanism to rationalize it away or focus on a possibly more positive, yet abstract future.

Grief is never easy, grief when you have a development disability is impossible.

Watching him go through these times builds a ball in my throat so heavy and thick that it chokes me. Days lost in grief for him are also lost for me. I can’t work or think or even sit up straight. I feel this way because nothing I say or do seems to make him feel better. My credibility as protector is destroyed.

When the beast of grief is prowling around my brother’s life, I notice that there is a second beast, a sidekick of sorts, this sidekick is my burden to carry. This second beast is the sting of injustice. I think that many of us who love someone who is vulnerable by societal standards has felt this painful sting.

Is it not bad enough that our loved ones live their lives with so many barriers that on top of all that they face, they also get lost in exponential grief and sadness?

On a personal level I am so sorry that life is so hard for my brother, that he witnesses my able privilege, and the able privilege of many others daily.

The sting of injustice scales outwards, from the hurt I feel under our roof to what is happening outside our doors. To persons with disabilities living daily with discrimination and prejudice, intentional or unintentional. To the added mental and physical health challenges faced by most. To being forced into a life of poverty. To being abused. To enduring traumatic stress. No matter how caring and loving we are, discrimination, poor health, poverty, abuse and traumatic stress for persons with developmental disabilities are inescapable. They are embedded into our systems, our culture and our society.

The duo of grief and injustice can break my heart more times in one day than I thought was possible.

Then suddenly, as quickly as it came, it goes away. You see, no amount of cake or songs by Depeche Mode beat back our beasts like friends and neighbours. When you come through our front door to visit, when you cross the street to chat, your smiles, your hugs and your laughter send grief scurrying back to the shadows and soothe the sting of injustice.

Thank goodness for you, our community, who unknowingly bring so much relief on our most difficult days. Thank goodness for you, who re-charge my heart and soul so I can fight again another day both inside and outside my front door.

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The statistics below are from a recently published as part of a brilliant article entitled “Freeing our people: Updates from the long road to deinstitutionalization” by Natalie Spagnuolo and Kory Earle in the Canadian Policy Alternatives.

Violence

  • People with intellectual disabilities—especially women and girls—are at elevated risk for sexual violence.
  • Approximately 83% of women with disabilities will experience sexual abuse at some point in their lives. Girls with disabilities are four times more likely to experience sexual abuse.
  • Approximately 40% to 70% of girls with intellectual disabilities will be sexually victimized before the age of 18.
  • An estimated 20% of cases of sexual abuse against women with disabilities are ever reported to authorities.
  • People with intellectual disabilities are 2.9 times more likely to be physically assaulted, and 10.7 times more likely to be sexually assaulted than non-disabled people.

Discrimination

  • In Canada, 50% of discrimination cases relate to disability.
  • 34.9% of people described as having cognitive disabilities (including intellectual disabilities) reported experiencing discrimination in the past 12 months, compared to 19.4% of people with other (not cognitive) disabilities and 10.6% of people without disabilities
  • 28.9% of people with cognitive disabilities reported being a victim of some crime, compared to 20.4% of other (not cognitive) disabled people and 17.6% of people without disabilities.

Housing and homelessness

  • Among Canada’s homeless population 45% identify as disabled; within this group, intellectual disability—a proven factor putting people at risk of homelesness—is disproportionately represented.
  • Almost 25,000 Canadians with intellectual disabilities (15.1%) experience core housing needs, compared to 11.1% of other people with disabilities (not intellectual) and 11.1% of people without disabilities.
  • In Ontario alone, an estimated 10,000 people with intellectual disabilities are on a waiting list for residential support (the wait time in Ontario was recently estimated at 22 years).
  • An estimated 100,000 to 120,000 adults with intellectual disabilities face housing and support gaps.

Poverty and employment

  • People with intellectual disabilities are among the poorest people living in Canada: 34.3% rely on social assistance, compared to 8.6% of people with other (not intellectual) disabilities.
  • 20.6% of people with intellectual disabilities live below the low-income cut-off (LICO), compared to 12.5% of people with other disabilities and 10.3% of people without disabilities.
  • In 2011, the national employment rate for people with intellectual disabilities was 25.5%, compared to 47% for people with other disabilities and 74% for people without disabilities.
  • 61.2% of people with intellectual disabilities are not in the labour force, compared to 41.9% of people with other disabilities.

Unmet health needs  

  • People with intellectual disabilities experience some of the highest rates of psychiatric disabilities and have a high need for mental health services. Yet they tend to be overlooked and neglected in mental health policies, training and related efforts.