This morning, I’m asking myself: What will it take for people to actively get behind and support the fight for equality, human rights and needed services for profoundly disabled people and their families?

I spend far too much time on Twitter advocating.

I spend far too much time writing emails to change the system.

I spend far too much time sitting alone dwelling on the precious years of my adult working life which are never to be retrieved.

I spend far too much time worrying about how I will survive financially into the future as I near enter my late 50s.

And I spend far too much time trying to figure out what it will take for people – yes you, the person reading this blog piece – to actively, and I mean ACTIVELY, get behind and support the fight for equality, human rights and needed services for profoundly disabled people and their families.

So, I ask you, what will it take?

Do I and other families need to put out videos showing the struggles, the “ugly and raw” aspects of our daily lives so to make your heart ache as ours do?

Do we need to stop showing only the smiling, cute, or heartwarming photos of our profoundly disabled child / adult child, instead showing you the reality of what we see more often than not?

Do we need to have our advocacy work be more appealing, more “fashionable”, for the public to take it on board as they do other trendy causes which actually don’t even relate to their own person lives, just as profound disability probably doesn’t either?

What will it take?

I can only dream of a massive public response where people take to the streets in droves like they’ve done for Marriage Equality or in support of Ukraine or the Yes campaign.

Where are you all now?

Ask yourself if you’re doing enough to help. And then remind yourself of this fact:

Disability is the world’s largest minority group,
and the only one that any of us can become a member of at any time.

Think about that, please, and then help us fight for what our profoundly disabled loved ones, and ourselves, need to support their very challenging lives.

a good mother doesn’t complain
about changing nappies
near 18 years
and counting
the boy is now a man

a good mother doesn’t mind
the chronic pain
her aging back
compressing over time

a good mother doesn’t dream
of life before
the caring
year after year, alone

a good mother doesn’t scream
but into the abyss
no one
to listen nearby

a good mother doesn’t fight
systems that destroy
life precious
ignoring pleas for help

a good mother doesn’t grieve
before her child dies
palliative now
she must only be strong
only be strong

a good mother doesn’t hope
for life after death
not her own
but her child’s
lest guilt overwhelm

a good mother doesn’t cry
in front of anyone
doors closed
for no one to see
but the reflection in the mirror

a good mother doesn’t believe
she deserves better
no support nor boost
to continue her own
once important life’s goals

a good mother doesn’t want
for more than she has
ungratefulness
is what that would be

a good mother doesn’t need
rest, comfort or friends
isolation
to be handled by such a saint

a good mother doesn’t care
for herself
selfless
she is the image
of the ideal mother

a good mother I am not
for I complain and I mind and I dream
for I scream and I fight and I grieve
for I hope and I cry and I believe
for I need
for I care

all I do is care.

(written by Tracy McGinnis, 18 March 2022)

I put out an advocacy tweet this morning calling for more financial support for family carers as prices for everything from fuel to electricity to groceries to auto insurance are increasing rapidly. Everything BUT the meagre social welfare we receive is going up, that is. And I know I’m not the only carer out there who is beginning to sink financially.

• The heat goes on less.
• I don’t drive hardly anywhere when I get the rare chance, despite at times I’m desperate to do so.
• I sit in a more dimly lit room than I would like.
• After I get the numerous medical appointments for myself done, I will need to cancel my private health insurance because I simply can’t afford it anymore.
• And recently, I’ve begun listing various items for sale online.

I hate being on welfare. I was raised to be independent, to work hard and to be self-sufficient. I didn’t put myself through University and then through Graduate School, studying while working full time, for many years just so I could lose everything that I worked so hard to secure, only to become dependent on a system which views me as less-than. It is humiliating and infuriating, in equal measure.

I also hate being a full time carer expected to live on crumbs as if the work I do around the clock isn’t worthy of fair pay…you know, an actual salary, complete with a pension accruing, so that when the day comes that I am no longer a carer, I don’t have to depend any more on the social welfare system. Doesn’t that seem logical? Surely the government doesn’t want to perpetuate poverty and dependency?

In my thoughts today after I made the above tweet, I began really contemplating all that I do, and in that of course comes my son’s numerous conditions. So, I made a list. You’ll see it below. Keep in mind, I do this alone, as a lone parent carer, around the clock. Not only am I sinking financially, but after nearly 18 years, my body is now in chronic pain. Arthritis in my major joints, Rheumatoid Arthritis, Degenerative discs, and most recently diagnosed with Asthma.

But hear me: I do NOT want pity.

What I want is for the powers at be to read this blog, then read below the medical conditions of my beloved son, Brendan Bjorn. Tell me honestly, could any of you do what I do 24/7?
Could you? Would you?

It is way past time that family carers of profoundly disabled children / adult children are treated fairly, equally, and provided with full, proper supports and remuneration.

When that happens, then I will finally be quiet.