Active Support

 People that know me, know I am a poet, public speaker, political activist, professional actor, and most importantly, a husband. 

What most people don’t know is that none of that would be possible for me without the active support of my family, and my disability support workers. 

Many people including some health professionals put too much focus on my Cerebral Palsy. 

My first rule is to treat each person as an individual, just because I have Cerebral Palsy doesn’t mean I am the same as everyone else with Cerebral Palsy. 

My second rule is take a holistic view of my life, yes, CP is a part of me but I have a family life, a social life, a working life, a spiritual life, and a sexual life. 

Of course it is important for support staff to be aware of the physical and social attitude barriers my disability creates. 

Lack of access to my community is the number one physical barrier I have faced in my forty years, because of this I have to plan my life like a military operation. 

Negative social attitudes are the next biggest barrier faced by people with a disability and despite being blessed with great communication skills and an extrovert nature I have not escaped the impact of bullying and social isolation. 

While it is never a support workers job to shield me from these attitudes it is important for them to know how they impact my life, this includes being aware of their own preconceived attitudes towards disability. 

In the old days there was a medical model approach towards caring where you were the patient and carers looked after you; now it is more important to take an active support approach to care where staff are doing things with me not for me. 

Finally in a note to the able world I say, take the time to see me not what you think the disability makes me. 

Notes To The Able World

In frustration I write down these notes to an able world

My fingers and toes even my back might be curled. 

but that is no reason for the derogatory insults you have hurled  

Don’t patronise me with your sympathetic smiles;

My disability shouldn’t mean my character is on trial  

Notes to the able world, you might try and lock me out

But God just gives me new abilities to be unfurled

So when I am not given equal access you will hear my shout

I am an alpha male, so even though I live in pain don’t expect to hear my wail  

Notes to the able world, do not look at me like I am some kind of freak show

You and I both want the same fair go  

Life struggles will put us all at some point in a foetal curl

Man, woman, boy, or girl.

In frustration I write these notes to an able world.

27 February 2023