The Illusion of Inclusion

The Illusion of Inclusion 

'We accept disability' says the government through awareness campaigns, advocates have created sunflower lanyards, education via social media about conditions and lived experiences, discrimination laws are in place. But do disabled people really feel included within society and within the communities they reside in? Is it just a big smoke screen of an illusion?

 

With Mark Bulter recently announcing that Autism apparently has levels of mild, moderate to severe and taking away NDIS funding for young disabled, vulnerable children. Because according to him autism isn't a lifelong permanent condition I thought it would be a great time to write about my experiences growing up disabled.

 

We all have varied experiences living in society as a disabled person however one thing that is often common among us is that we have many horror stories and these stories and experiences shape our beliefs about society and unfortunately at times ourselves.

 

Growing up disabled has shown me how society views disabled people; my experiences being a disabled female haven't been kind. From birth I have lived with a limb difference, that may seem like a minor disability and I myself have minimised it throughout the years unfortunately.

 

But the facts are I Iive in a world made for two hands, gloves are made in pairs, necklaces are a two handed job and every task I do such as cutting is taxing on my body, in order to do anything it has to be a whole body job. To minimise my limb difference is to take away all of the hard struggles I face every day, from simple things like tying my daughters hair up, to doing my own buttons to more complex tasks like carrying shopping bags or cutting up food.

 

I have heard from able bodied strangers whilst standing in line minding my own business out in society that my limb difference ‘isn't that much of a big deal and I should be grateful it isn't my leg’. This mindset from others has led to decades of erasure and silence of my own struggles. Also the good old ‘I'd kill myself if I had to live like you’, I now just see it as a sign of a weak natured person, however hearing that someone would rather be dead that be like myself is deeply offensive and it’s also something that you don’t want to hear while you’re at the post office running errands.

 

I have also spent a life time of strangers asking me such a personal question without even asking for my name. What happened to your arm? Are you a thalidomide baby? I find it so strange having to explain my existence what happened in utero as a zygote to a random person off the street, this is apparently an appropriate question to ask a disabled person who you haven't even met. An able bodied person isn't put on the spot and asked why they are the way they are, it's like we owe society an explanation for existing. If you tell them to fuck off you’re a grumpy disabled person and the only disability is my attitude or you oblige to tell them your life story in front of another twenty strangers listening in.

 

I will share a few moments of my life experiences showing that inclusion isn't reality to the disabled person. These experiences have shown me that I do not belong within my own communities and within society. These stories are condensed and are only a few experiences out of the many I have had the pleasure of being thrown into.

 

At the Markets.

 

One day in my twenties I decided that I wanted to be a part of a market stall gathering. I had paintings that I wanted to sell and set up shop for the day I had spent time with preparing my stall and felt confident and happy I was doing it, I had previously done one and that was with a crowd of like-minded artists and odd balls but this market was more broad to the general population. While people walked past I started to notice small comments and as the day grew and it was almost the end my thought process was this ‘shit I've had more comments about myself rather than my art'. I had many people come and look and strike up a conversation "wow good on you for getting out of the house", "may God bless you, you poor thing" and again the almost stock standard "what happened to you?" I noticed that no other stall holder had to have these conversations and I felt like I was a side show. The good on you for getting out of the house was deeply offensive, am I supposed to stay home and hide away from society due to my limb difference? After the market ended instead of feeling proud of myself I felt anger towards society and my experience felt tainted and ruined, I didn't want to participate in any more market stalls after that. I learnt that day that my experiences with other stall holders were vastly different others creations were looked at for what they were, that time was spent studying the crafts and for myself I was the object of study.

 

Driving

 

When I was a teenager I decided to reach a big milestone, to get my licence. I had gone to Motor Registration and walked up to front counter and said I was there to sit for my Learners Permit. The lady behind the counter said yes and let me in; I passed the test with flying colours and excitedly went back up to the counter. That same woman looked at me and said "I didn't realise you had one arm, hold on, you need a doctor to fill out this medical certificate.” My stomach dropped and any excited feelings turned to sadness. I went to a doctors surgery and waited patiently still feeling the sting of the moment and when I went in that doctor said to me these words "No I'm not filling that out, you are a danger to the other road users and we don't need any more of you out on the road." I walked out in tears and rang my Mother, my Sister over heard and picked me up and drove back to Motor Registration and she yelled at the lady and demanded my money back.

I was beside myself with sadness for many days it felt like a massive blow, I wasn't worthy of driving, society was telling me I wasn't a normal teenager and I felt undeserving of a milestone moment.

 

Many years later built up my courage and went for it again, a Doctor agreed that I could drive and I got my Learners, still feeling that pit in my stomach I persisted and tried my hardest to be hopeful. I had rang a Driving Instructor and specifically told them about my limb they said to me that was fine and the day of I again got excited and got in the car, the Instructor looked at me puzzled and annoyed he said "sorry I can't help you, you need to find a specialist driver." I was in that car for less than a minute, again I quietly sobbed to myself for a while. I eventually found a Specialist Driver who did a few lessons then retired; I kept my licence as a form of Identification and gave up for a while.

 

A few years later I did driving through a Government Funded Course, the Driving Instructor was fine with me however when it came to getting my Ps I had to have an Assessor in the car for the test, I thought to myself that's fine at that point driving was so tainted that I expected something. I passed and I stupidly got excited again walking into Motor Registration to pay, I got called up to the counter was told that my paper work would have to go to the board for acceptance, that took a few months.

 

I went home crying yet again I felt sub human, that I wasn't deserving and had that old Doctors voice in my head "we don't need more of you on the road" I did get accepted but due to the degradation I faced throughout the process I didn't drive for many, many years.

 

That experience reminded me of how disabled I must look and what people's perceptions are, that important teenager milestone was tainted. Happy memories made by majority of the population was ruined by a system, a system I understand is needed however my experience shows that it lacks any compassion and severely degrades a human. I have to yearly get my doctor to fill out a fitness to drive, a reminder that I am disabled and the memories attached to driving.

 

Work

 

I have spent a lifetime trying to find employment and to be seen as an equal candidate for a job. I had spent many hours looking for work, job interviews to be met with the awkward look and questioning if I can lift a box to outright comments of I would be a liability to the company.

 

I had in my teens acquired a job at KFC the experience highlighted the stigma and discrimination surrounding disability for myself and another girl. The manager put me on drive through, only drive through they didn't want me in the front counter because my arm would have been more obvious, that wasn't said to me but it was just known. They also didn't let me fry chips for long because I wasn't quick enough filling them up, due to this I was stuck in the drive through window. It wasn't long before the manager pulls me aside and says to me "the cleaner girl with Downs syndrome has an Assessor come every year and assess how much we pay her I'm going to ask if they can see you too ok." I stood there stunned, I felt my heart fall to my stomach, and the more I thought about it I was so angry that the girl with Downs syndrome was getting paid less than minimum wage so I wrote a note for the next shift and left it on the managers desk never to return. My Mother I remember being angry at me for leaving the job she must have thought that it was fair that they would have paid me less than minimum wage based on my disability. I want to acknowledge I understand why people with disabilities are assessed however I don't believe that below minimum wage is humane and should be the sole purpose for those assessments. 

 

Later on in life I went for a cleaning job that my mother used to work for. I called up and mentioned that I cleaned with her a bit and that I'd like to work for the company, the lady on the phone was so excited her demeanour was lovely; she said just come in this day for an intake session. The day came and I was wearing a fancy black suit jacket, I walked up and we struck up conversation and her demeanour again was lovely, I raised my hand during the intake with questions with them being answered with respect. Around the middle I got a bit warm so I took my jacket off and her eyes landed on my limb difference and she from then on didn't give me any eye contact, was closed with her answers to questions towards me; I knew in that moment I wasn’t going to get the job. She had given everyone a code to log on to the portal to register and apparently mine had glitched, I knew that was total bullshit. I told my mother about my experiences and she said maybe it just did glitch and contact them during the week, I did I called for weeks with vague answers every time ‘our tech team are working on it’. I was more angry than sad this time around so I kept hounding them just to make them feel awkward; I wanted them to say it was because of my arm but they can’t do that due to discrimination laws. I wrote emails stating it was discrimination and how appalled I was, I wanted them to know that I knew and I felt I owed it to myself to stick up for myself in a way.

This company was notorious for hiring people who had working visas with limited English, these workers were doing tasks in people's homes that weren't of the list and being made to stay back for free to continue cleaning. So, in hindsight it was probably for the best however the sting of being discriminated against was still infuriating. 

 

People think discrimination laws work and protect vulnerable people; I laugh at the notion that they help disabled people every time I hear it. Reality is that discrimination laws mean nothing if you haven’t been hired yet, you just won't be hired with some brief response 'unfortunately you weren't suited for the job.'

 

 

Motherhood

 

Becoming pregnant is a very special time for most parents filled with joy seeing your belly grow bigger, being excited finding names and all things pregnancy. However my experiences were tainted by Midwives and Doctors. With my first child especially I was interrogated by a few Midwives on different occasions suggesting that I wouldn't cope nor handle having a child or making the assumption that the child would be disabled themselves, they actually offered and pushed abortion or adoption options. The important scans were tainted by the Technician saying that they had to count every digit to see if the children had all ten fingers and toes so finding out the sex of my child was tainted by this idea that there must be something wrong with my children because they grow inside of my disabled body. This assumption is carried on through the other side of child's family Grandparents asking the Father "Will the child be normal?" Further highlighting that there is something wrong with me. Within other pregnancies I braced myself for these conversations knowing that they would come up and how best to cope; I shouldn't have had to mentally prepare for an ultrasound scan.

later in life 

Now later in life I have had an onset of two other conditions FND and POTS this idea that a person can get onto DSP and NDIS because they are disabled is laughable, I still after four years haven't been accepted into either. There is also judgement within the medical fields due to FND and also the Chronic Illness community at times aren’t so inclusive or accepting of the diagnosis of FND due to misdiagnosis or just straight out beliefs that it doesn’t exist.

 

Due to these conditions of FND and POTS I'm an ambulatory wheelchair user and my goodness it's on another level. I use an electric wheelchair funded via go fund me as i cannot use a manual wheelchair due to my limb difference.

 

It's more the physical navigating that I notice isn't inclusive for a disabled person.

Pavement, crossing roads, elevators, toilets yes even disabled toilets and buildings just as a general. The whole community set up isn't set up for wheelchair users and it’s infuriating at times, having to go so far out of my direction to find pavement that I can safely navigate; I seldom go out. Also just to add electric wheelchairs aren't water proof what is that about? Are we meant to not go out at all during winter?

Also having light and noise sensitivity big crowds, events and shopping centres aren't that inclusive the constant barrage of flashing lights and noises prevents myself from going out much. I've just had to accept that the world isn't constructed well for disability.

 

I'm going to leave you with a moment that was so haunting for me another person’s story. When I was a Support Worker I had a client that yearly would go to a University and do a talk about suicide prevention. We got up to the floor by elevator and sat up at the very top, two men had to pick her up and carry her downstairs to the podium. After her talk we sat up and she turned to me and said "Nadeen if there was a fire here right now what do you think would happen? The elevator would be out of use." My eyes widened with shock and my mouth dropped and she laughed, "Yep! I'm a sitting duck it's up to someone kind enough to carry me down the twenty flights of stairs or I'll just sit up here and burn." I had Goosebumps realising that there was no procedure in place that assured the safety of wheelchair users.

 

So where is this inclusion? How are we treated as equal?

 

The lived experiences of people living with disability will show you it’s simply not true. Having Awareness months and government jobs having a select quota to hire some disabled folk for a pat on the back that their company is inclusive is just bullshit if you ask me. My experiences are no different from other people with disability we are taught via our experiences that we do not belong in an able world, that we are seen for what we can't do rather than our strengths and we somehow automatically owe society explanations for why we look different and exist whilst we are running quick errands.