A story of a young girl Creating a beautiFUL and pleasurable life, undefined by her disaBility.
Hi!
To give you some background my little sister Tara has spastic quadriplegic cerebral palsy and epilepsy (awful name we know). Basically it means her cerebral palsy affects her muscle control in both her arms and legs. CP affects all the muscles in the body so her speech is also impaired. CP doesn't affect her cognitive ability however, her absent seizures do. She's not too far behind your average 23 year old and is a fun, bubbly, caring and adventurous woman who is creating a life undefined by disability.
Tara relies on an electric wheelchair and requires assistance with personal care, getting dressed, getting in an out of bed, getting in and out of her wheelchair, cooking and other daily tasks that we take for granted.
Teenage girls are nasty so she has no friends and relies upon her wonderful Support Workers to act as carers and also as friends. She also relies upon my friends to be her friends so as you can imagine any new friends I have go through a mini recruitment process and are well vetted to ensure that I feel like our values align and I have the confidence to introduce them to Tara because she does not deserve to go through what she did in High School again.
Tara said to me this week "Kay, I'll never have a boyfriend because who wants to be with someone like me". It broke my heart. She then went on to say “if I can’t make friends then how am I supposed to meet a potential partner?”
Yes, it's possible for people with disabilities to have successful relationships and sex lives however, majority of these people probably don't require 24/7 Support Workers.
Majority of the other like-minded and like-ability people Tara knows with severe physical needs and use electric wheelchairs do not have friends, partners or sex lives. They’re all in the same boat, and feel ostracised even further than other people with disabilities who do not have a physical aspect of their disability. For example, most social groups for people with disabilities will focus their attention on people with intellectual disabilities and people like Tara are still put in the ‘too hard to deal with’ pile. We’ve tried to involved Tara in activities with other like-minded young people with disabilities and we’ve been told that they can’t cater for her or her needs. Imagine how it feels to be someone with a disability already being a minority in society, trying to better yourself and make friends and find out that you still can’t participate in activities designed for people with disabilities. It’s heartbreaking.
This week the Federal Court of Australia made a decision that people with NDIS plans can use their funds for specialist sex workers. Huge progress in the right direction! But then comes all of the very negative comments and suggestions from people who are too ignorant to understand the issue properly. These negative comments are also a massive push backwards for people with disabilities. They're already socially isolated and living in a world where majority of the population don't take the time to understand the issues people with disabilities face.
Although this decision will make a tremendous difference to the lives of many people with disabilities we've jumped ahead of some of the core issues.
Until a few years ago Tara hadn't even seen her own vagina. We didn't even think of it, but I got a mirror and showed her. Then we had a discussion about how everyones looks different and explained what is what down there. I recently discovered the Instagram page ‘Comfortable In My Skin’ and I was able to show Tara that everyone’s vulvas, breasts and bodies are different and all of these women love themselves just the way they are.
We're a very open family, and I wouldn't say we do things by the book. Tara gets laser hair removal, has periods, has her bikini line shaved, goes away for weekends solo with support workers, goes on overseas trips and is about to move out of home and live independently. Her life moto and personal brand is creating a life undefined by disability. Everyone in her life is an advocate for this brand and supporting her to achieve her dreams and goals. We ensure we always have a values aligned team supporting Tara
I have many questions that I'm hoping you can help me find the answers to with your wide network.
- How does one make friends while living with a disability? Especially after going through a traumatic experience as a teenager leaving her isolated, confused, alone and feeling worthless. Specifically, how do we get people to focus on Tara rather than her disability or her wheelchair?
- This also goes into how does someone navigate what a relationship might look like for them. All relationships are different but there's no education around what the dynamics of a relationship with a person with a disability might look like. The education available is mostly for people who have intellectual disabilities but not for people with physical needs. In the eyes of society we have idealised what a relationship should look like by basing our ideals from movies, books and celebrities. So in Tara mind the only option for her is what society demonstrates as a relationship. However, it’d look much different to that or it might be similar, but someone needs to educate people like Tara on safe relationships, boundaries, types of relationships, love languages, having your needs fulfilled and the list goes on.
- How does someone who relies on other people to manage their money, their personal care, their manual handling and most other aspects of their life begin to explore their sexual interests?
- Then continuing with that how does someone who's NDIS plan is developed in conjunction with their mother, allied health workers, plan coordinators and support workers ask for something so personal such as i’d like to use the services of a sex worker and have this added to my NDIS plan'? When something usually kept private now has everyone in your life knowing your personal preferences its overwhelming.
- Now say you get the funding for sex work in your NDIS plan how do you find a suitable sex worker that is specialised and won't take advantage of someone so vulnerable?
- Where do we find sex toys that are suitable for someone with impaired functionality in their hands?
- How do we educate her support workers around the fact that she might want to use a vibrator? Because the chances are they will need to get it out of the drawer for her to use and then obviously leave her alone while she uses it. But who wants to ask someone else to grab their vibrator for them... In addition to getting it out of the drawer for her someone will need to put it on charge and help her wash/clean it.
- There's also not really an avenue for us to share our learnt knowledge. For example, how do we manage Tara’s periods? How do we go about getting laser hair removal for her Brazilian area?
I think the community you have built is inquisitive and want to learn about different topics!
love Karina, the big sister :)
