Growing Up with a Disability
Growing up, I was immersed in world where I was surrounded by disability, by virtue of living with Osteogenesis Imperfecta or by being around other disabled people in hospital or at school. Yet, I never described myself as a disabled person despite everyone around me labelling me as that, attending a special needs primary school and using a wheelchair for the first 16 years of my life. It wasn’t a part of my identity I felt comfortable with which is so ironic because having Osteogenesis Imperfecta informs every decision I make and how I experience the world around me.
Let’s face it, disability wasn’t a term that was particularly positive, attractive or progressive 30 years ago. Whilst we have seen some change around the perception of disability in society through things such as the Paralympics, change has been painstakingly slow and there is still much more that needs to progress.
Fast forward to being a thirty something, well-travelled woman: and I’m happy to share that I have fully embraced calling myself a disabled person. But why?
Well there are a few reasons:
1. Whilst change has been slow, disability is becoming more visible in society and these changes are making it easier to be a disabled person now than ever before:
- The government has several campaigns and initiatives to help disabled people get into and stay in work. The Disability Confident Scheme and Access to Work Scheme are two you should definitely look up if you are looking for work.
- Businesses understand the prevalence of disability are transforming experiences for their disabled employees and customers. Some companies ring-fence a number of jobs and schemes exclusively for disabled people.
- Retailers and service providers are beginning to understand the power of the ‘purple pound’, that is the collective spending power of disabled people. We are now seeing adaptive clothing ranges in high street stores.
2. Better onscreen representation than ever before and dedicated programmes around disability. Don’t get me wrong, onscreen representation of disabled people is still massively low, but prior to this it’s been non-existent. As an Asian Disabled woman, I have still never felt represented in society, an absence which has motivated me to be the change that I want to see.
3. We’re better connected to support each other and share knowledge with the ease of using social media. This makes me think about how tenacious Margaret Grant was when she set up the Brittle Bone Society in a time where it was much more difficult to connect with people and she created this amazing society!
4. More people are adopting the Social Model definition of disability.
- The social model says that people are disabled by barriers in society, not by their impairment or difference. Barriers can be physical, like buildings not having accessible toilets. Or they can be caused by people’s attitudes to difference, like assuming disabled people can’t do certain things. Removing these barriers creates equality and offers disabled people more independence, choice and control.
- The social model of disability was developed by disabled people in the 1970’s and 1980’s. Not everyone uses the social model and that’s ok. It came as a reaction to the medical model of disability which had been widely agreed with at the time.
- The medical model says disability is caused by the health condition a person has and the nature of this condition will determine what they can and can’t do. So the medical model looks at ‘what needs to be fixed’ with the person, not at his or her strengths or needs. I believe this creates low expectations and leads to people losing independence, choice and control in their lives.
5.The final reason is about the day to day mundane things in life such as calling the disabled booking line to book concert tickets or if I need to park my car, sometimes I need to use a disabled bay and my blue badge.
It occurred to me that even as an adult everything around me was has been labeling me as disabled just by needing through using certain services for me to go about my daily life, for example, booking tickets to see Drake in concert.
My condition is and has always been a part of me, just like I’m a woman, I’m British, my ethnicity is Indian, I’m a sister and I’m a daughter. I can’t separate from it and live a different life as if it doesn’t exist because every single moment of my life has been lived through this lens. Once I was at peace with this, I jumped in feet first into owning this (not so) new identity.
Since adopting this view and embracing my identity by calling myself a disabled person, I’ve become more empowered as an individual and now belong to an enormous community. It has motivated me to become a disability rights advocate and fight for everyday equality along with defining my career choices.
I would love to hear about your experiences – get in touch @shanidhanda