Sunday, May 22, 2011

My Journey

Someone recently said to me that disability is a great equalizer... no one is immune, no one is exempt, disability treats everyone the same...

But does it?

Disability doesn't discriminate, no... that much is true... but it also doesn't equalise.

A person who deals only with an intellectual disability cannot truly understand the life of a person living with a physical disability. A person who has a child with a disability, but has been blessed with relatively good health cannot truly understand the life of a person dealing with complex medical issues, or what it's like to go to bed every night wondering if their child will still be breathing in the morning... and a person who deals with a known and understood disability cannot truly understand the isolation and loneliness of dealing with a disability that is rare or even undiagnosed. And of course, vice versa.

Yes, as parents caring for children with special needs and disabilities, we are united by a single similarity, yet divided by our differences, and it is the division that seems to be a note of contention.

The Federal Government here has announced a new funding structure for children with disabilities, supposedly an attempt to give them a better start at life... but only if you tick one of their boxes. If you have Down Syndrome, Cerebral Palsy or Autism, you can get the funding. You can also get the funding if you have visual or hearing impairment... but if you don't, it's like your disability isn't important enough.

If you have Down Syndrome, Cerebral Palsy or Autism, you can get support... but if you don't, you go it alone.

They are the 'Big 3' or the 'Popular Kids' in the disability playground.

Don't get me wrong, I do not dispute for an instant that they are relevant disabilities, I don't dispute that they are very real and they come with their own complex problems... but I can see why they are the Big 3. Just in numbers alone they account for the largest portion of disabilities in Children in the country.

And for them, that's great... it really is... they have the numbers for the support and the funding and the interest and everything else...

But what about for those of us that don't tick one of those boxes?

What about those of us who dare to be rare?

Where does it leave us if we can't conform to a predefined standard?

Out in the cold... alone, and very lonely.

Sure, the parents of this kids understand what we're going through... they understand some of the complexities of dealing with a child with special needs... but they never really 'get it'.

They don't get how frustrating it is when those of us left behind miss out on opportunities for our kids because we don't have the right diagnosis. They don't understand the frustration that we have when we have to fight for everything that little bit harder because we don't tick a box.

But, I guess, at the end of the day, that is all part and parcel of this life. We are dealt with our own struggles, and they are our struggles to endure. If we are lucky, we have someone to share the journey with... if we are not so lucky we take the journey alone... but either way...

It is a journey that will make me wearier physically, but stronger emotionally... It will take me away from my friends and family, but make me closer to God... It will try my patience and fray my nerves, it will grate my feelings until I am raw and vulnerable, and then it will reward me in ways that I never expect.

It is a journey that not everyone else will understand because they don't live it on a daily basis... they don't deal with my confusion, my struggles, my isolation... they don't deal with the medical complexities and fears... it is my journey... one that I think I am destined to take alone...

And I am ok with that... I really am.

1 comment:

Jayne said...

Thank you for writing this down, for helping raise awareness. I am a psychology student and a mum of a child with a minor disability (cleft palate)and I am currently studying a subject at uni called 'Disability, diversity and social inclusion'. Blogs like this help people to...if not understand completely (for how can we ever truly until we have walked that path?) gain greater understanding of the issues that surround people living with a disability, and the parents of children who have a disability. Will be reading with interest xx

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