What I have learnt from a brother with a disABILITY
My brother Todd has a disability. The disability is known as Smith-Magenis, a rare developmental disorder that affects physicality, intellect, speech, sleep, and behaviour. I like to think of Todd having less of a disability and more of a disABILITY.
In our society we like to use labels and often allow labels to hold so much power that they begin to define or even restrict a persons life. Yes, certain abilities of my brother’s are disabled yet other abilities are amplified. Yes, he needs full-time care and support to ensure his safety, well being and development, yet he is also an independent man with likes, interests, desires, and dreams like any other person. Today we celebrate International Day of People with a Disability. A day to celebrate their abilities, achievements, dreams, and also what they bring to our world. As Vikas Kanna says,
10 things I have learned from my brother
1. Always look at the
world with new eyes
For my brother, every experience has an element of newness. My brother often reminds me of a toddler looking inquisitively at the world and seeing every fine detail. Looking at the world with new eyes always keeps life exciting. The mundane activities of the day transformed into a wondrous adventure.
2. Give importance to the
small things in life
When Todd looks at a photo, it always amazes me that the first things he notices and gives gravitas to is the small details. The colour of someones shoes in the background, the leaf falling from a tree in the back ground, the pimple on someones chin. Luckily for me, being an ensemble member in many major musical, my brother notices the small things. This has meant that some of his favourite moments of me performing have been the moments I have deemed insignificant like walking on to place a cup of water on a table and then exiting stage. I always tell my fellow ensemble member this to know that there is always someone watching who notices the small details.
3. Always ask why?
Ok, to be honest, when Todd asks me “why this?” And “why that?” in regards to every little thing, it drives me bonkers. However, he is right. Rather than just accepting what is and what has been, Todd asks “why?” It gets me then asking “why?” And I am able to see through social conditioning and decide whether this is a good enough answer. Sometimes it is, sometimes I find that it is not. And that gives me initiative to live life on my terms.
4. Get rid of your
Speak your truth
Todd has zero social filter. Yes he has learnt many of societies niceties, and politeness but at the end of the day, Todd speaks his truth. He has not been conditioned to lie in order to be polite or politically correct. He just sees things for what they are without judgement, just fact. If he doesn’t want to go somewhere, he doesn’t want to go. If he doesn’t like someone, he doesn’t like someone. If I say “Todd, I’m going to the bathroom” he tells others “Emma’s in the toilet doing a poo.” Well, he’s right, I guess!
5. Express yourself
Todd is honest in how he feels at all times. Yes this equates to frequent temper tantrums but he just lets all his frustrations out. Yes they drive me bonkers and can be quite socially awkward when he is yelling and screaming in the supermarket aisle like a toddler in a 30 year old body. However, I know when he is happy, I know when he is sad, I know when he is excited, I know when he is tired. And I never have to experience passive aggression.
6. Live in the moment
Todd’s perception of time is limited. He has yesterday (anytime before now), today (right now), and tomorrow (anytime from tomorrow onwards). Therefore he really has no choice but to live in each moment. Having a limited perception of time means he’s on “Todd’s time” and on “Todd’s time” there is never any worries of being late, we’ll get there when we get there.
With Todd, I have developed such a level of patience. Patience when he asks the same question 10 times in a row before moving on to the next, patience during one of his tantrums, and patience when it takes him longer than others to learn new things. However, I am forever grateful for this continuous practice of patience. It means in other relationships not much bothers me and I don’t often sweat the small stuff.
For Todd it takes longer to learn new things and often it takes him many times to learn something. Yet his persistence to continue to try always amazes me. He always wants to learn new things and persists until he can.
9. Fake it till you make it
Todd loves performing. He always has and my golly gosh, what an amazing performer he is. I’m going to be honest in saying that his technical skill level is close to zero however his showmanship, characterisation, and commitment are all 10+ and that is something you cannot teach. Todd has the most amazing eye for picking up style and mimicking artists. He has done many lounge room and party performances of various musical numbers, Michael Jackson songs, and more recently, rock guitar solos. The wonderful Aruma (a disabilities service previously known as House with no Steps) have nurtured this by creating a “Da House Band”. Todd plays in this band and though he only knows one chord, he is spectacular to watch as he mimics rock idols whilst on stage.
10. Unconditional Love
Finally, through Todd, I know unconditional love. No matter what happens, I always feel Todd’s unconditional love. There is no questioning his intent, he simply loves me for me, through the good times and the bad.
So yes Todd may seem “different”, yes he expresses himself in more outgoing ways but I am writing here today to celebrate my brother for all the gifts he provides. We need to embrace the diverse range of abilities within our communities, be respectful to all, and also understanding. Everyone is unique, everyone is gifted, everyone has a lesson teach us.
No matter what your ability, remember there is only one of you.
You are unique.