A tragic rant

Yesterday Cindy Ali, aged 45, was sentenced to 25 years in prison for the murder of her 16-year old daughter, Cynara. Cynara had a severe form of cerebral palsy. Cynara could not walk, talk, eat, and required total, 24-hour care.

The story of Cynara’s death is a bizarre one, to say the least. Ms. Ali claimed that she and her daughter were subject to a home invasion and that the attackers suffocated her daughter with a pillow. In a story with striking similarities to Tracy Latimer, the prosecution claimed that Ms. Ali killed her daughter while the rest of the family was out.

Ultimately, outside of a coroner’s report, we don’t know what happened to Cynara. However there are things we do know. We know that Cynara required extreme care. We know that, living in Ontario, any non-family support offered to Cynara and her mother was likely fragmented and insufficient. We know that Cindy Ali had been providing physically demanding, complex 24-hour care for sixteen years with little help.

We also know that the research regarding caregivers is unequivocal – I can provide the peer-reviewed references if you are interested. Chronic caregiving is exhausting, isolating, emotionally draining, physically demanding, financially burdensome, and often harmful to the caregiver. As Eva Feder Kittay has pointed out in her highly influential book Love’s Labor, it is not uncommon for the care-recipient’s needs to completely usurp the care-provider’s, leaving caregivers in unjust situations where total sacrifice is required regardless of how sustainable or realistic. Parents are regularly required to do the impossible while society stands by and judges.

Supportive resources, while present, are fractured, difficult to access, and strictly rationed, meaning that funds are depleted quickly leaving many without support. Quite frankly, for a so-called civilized society, our unwillingness to care for people with disabilities and their caregivers is uncivilized, unethical, cruel, and shameful.

I have talked before about the fact that extreme caregivers are often painted into a mythical narrative portraying them as sacrificial martyrs, or saintly superheroes. This is a self-serving narrative that paints caregivers as super-human while ignoring every shred of research. This myth allows society to avoid helping extreme caregivers because society has decided the caregivers are uniquely capable. Using this myth, society lets themselves off the hook for care while abandoning highly vulnerable parents and their children. For me, this is a recipe for tragedy. Why are we shocked when the unthinkable happens?

It is much easier to blame Ms. Ali than to consider that we as a society failed Cynara. That, somehow, Cynara’s death may be our fault as well.  I personally believe that until we as a society ensure that such families have the services they need to cope these tragedies mean blood on all of our hands.  And I can assure  you, right now, most families do NOT have the services we need to cope.

Make no mistake. Cynara’s death is a tragedy. But so is a situation where a mother felt there was no other alternative. We should all be ashamed that we let this family down so profoundly. We should all be ashamed that we abandoned Cindy Ali for sixteen years and then sent her to prison when she could no longer function.

Cynara’s death is a call to Ontario that more help is needed. Will you hear the call? How will you answer?

2 thoughts on “A tragic rant

  1. The whole situation is so said and yes, I agree there needs to be much more support and especially giving breaks to families and day care and then as they age into adult hood give them a living like we would want to have.

    Like

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