Grief and disability

Written by Tammy Milne – PDA’s TAS Associate Director

Phil and I met at the Footy Club in 1987 and his pick up line was a classic “I’d like to get you alone”. From this I deduced that with a line this lame he must be okay! He was 33 and I was 23 years old.

We were together for 33 years until his death on the 17th May this year, 2021.  He was 66.

What makes our story different from other love stories and stories of loss and  grief?

 I am a woman with a physical disability.

Although this shouldn’t make a significant difference to our relationship or any relationship of love and loss it does.

Here is why.

As other people with disability will know the pressure of society, discrimination and the constant barriers put in the path both physically and psychologically take a huge toll on people with disabilities on a day-to-day basis and the cumulative effects can be debilitating resulting in lack of confidence and self belief. 40% of PWD live with depression while those without disability are only 8%.

Adults with disability are more likely (32%) to experience high or very high levels of psychological distress than adults without disability (8.0%). This is particularly true for adults with severe or profound disability (40%) (ABS 2019c)

So having a partner who supports your every endeavour with steadfast dedication and solidarity really helps to negotiate this world and support a partner to be a the best they can be. 

That constant reinforcement that you are ‘good enough’, you are, ‘clever’, you are ‘normal’ should be bottled and available to everyone. The quiet love that’s stands on your sideline and cheers for you regardless of the situation.  When this is gone, the memories and years of support are still there and the therapeutic work of their support is still there but they, the person, are not and the loss is huge. It’s like your team of two has been cut to one and a whole side of yourself has been taken away.

I’m not talking nasty co-dependency. I’m talking about the best of what kindness, love and genuine dedication to each other gives to a relationship.

So that’s the loss of the emotional support. So then add the loss of the physical support. The day-to-day jobs that as a partnership with one person disabled the other takes on; like checking the mail, like getting the newspaper from the driveway, like the million other little things they do that makes your life seamless. Even with NDIS support and support workers those jobs that seems to have been absorbed by the other as a matter of osmosis can not be replicated.

Even the simple fact of safety, of having that extra person in the house that protects you when a medical emergency occurs. If you fall or there’s a medical situation they can phone for outside help. The unpaid care that person has undertaken over the years of your relationship can never be estimated in monetary terms, but would potentially run into millions of dollars.

Our love was deep, dedicated and a bond of strength. We were equals. The gap left by this loss and the subsequent grief cannot be quantified as any more than an ABLEd relationship (a relationship where both parties are not disabled), but there is qualitative evidence in the need for additional physical supports and time will only tell if the loss of the emotional support will result in other supports being needed.

In conclusion a disabled/abled relationship provides both parties with a rich and full life. It cannot be argued that the relationship is not equal, but the loss, grief and emotional and physical support does impact and does result in a more raw loss for the disabled partner left behind and a unique perspective on grief and loss.

[From PDA: Dear Tammy. Thank you for sharing this tribute to Phil, your celebration of a relationship built on true love and your heartfelt and incredibly moving exploration of grief. On behalf of the PDA Family we send you our sincere condolences, love and support. RIP Phil. 💔]

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