Uniquely Me - Chelsea's story

Connect and Grow Magazine - April 2024 - Edition 8

The month's theme is being uniquely me, which we always promote.

The book Uniquely Me is available on our website:

What is it that you do that is unique to you?

We are sharing Chelsea’s story of working with providers in the disability sector and how they embraced her as the person she identifies as.

Chelsea likes to have her hair all different colours, and while that should never be an issue, she also has the diagnosis of Down syndrome; she was laughing when she said that so many people, a person who has the genetics of Down syndrome, shouldn’t have rainbow hair and tattoos.

Chelsea always wanted to be a singer and have her favourite artists, such as Pink and a few others that she said she loves to listen to; she laughed again as she shared with me about even liking Matchbox Twenty and One Republic.

Chelsea is 24 and contacted me after following our Connect and Grow magazine. She asked if she could share her story of living with Down syndrome and being treated like she is not able to do the things that she loves without people, especially support workers, telling her what she should and shouldn't do, such as colouring her hair rainbow colours.

Chelsea's mother helped her apply for NDIS and have a physiotherapist for her right foot, which has a limp, a speech therapist for her speech patterns and eventually her ability to sing, and a support worker to help her learn to cook, be independent, and prepare to live on her own.

Chelsea told me that she initially didn't want to spend time with a physio and speech therapist, but after a while, she could see that things did improve. She has been taking singing lessons, which she pays for from her part-time job in a cafe. She is also having dancing lessons and finding a way to dance even though she has a permanent limp on her left leg.

What I noticed about Chelsea in our meeting while she and her mother were meeting me while in Victoria meeting with family and friends is how much she smiled and kept telling me, "Life is good, Jacqui. It really is good!"

I asked Chelsea how she has found having a support worker in the past. She only has a person a few hours a week now as she has learnt a lot of skills, and she also has splints for her left leg and will always require physiotherapy for that.

Chelsea shared with me how many support workers they have had; she said most of them have been independents, " Mum and I like to support small business, so we spoke with independent, unregistered NDIS providers, but that rarely worked out; we went through 8 of them."

Chelsea's mother, Tarnisah, shared with me that when Chelsea was little, she had a lot of meltdowns; she was unable to find the words to express herself.  A lot of sounds were overwhelming to her.

The support workers they interviewed all said they understood Autism and Down syndrome traits, but it turns out they only said that to get the job.

Wearing noise cancelling Headset helped a lot

Chelsea went on to share this story: It was two years ago, and Mum was at work, and I had come home with my support worker from my job at the cafe; I asked my support worker to take me to the stores so I could shop and prepare a meal for mum as a surprise. The support worker told me she would be she couldn't be seen with me; her comment was, "You look weird with your hair and the tattoo of a butterfly on your arm; I am ashamed to be seen with you" Chelsea has a tear on her eye as she continued on with the experience. Chelsea shared that she was hurt and upset but wanted to cook a meal for her mother and make it a unique dinner; it was her mother's birthday. She entered the store, and the support worker said at a coffee shop in the shopping centre.

Chelsea shared that when she had finished, she approached the support worker excited that she had found a vanilla cake with icing for her mother's birthday cake and was trying to show the support worker when the worker got up and slapped her across the face and yelled at her.

Chelsea said she was shocked; she didn't know what she had done wrong. Eventually, they got home, and the support worker was supposed to assist Chelsea with cutting vegetables. She sometimes had trouble due to a tremor in her hands, so cutting vegetables can be a challenge; instead, she told her she was stupid and sat at the table playing on her phone.

Being as independent as possible is important for everyone.

Chelsea continued to attempt to cut the vegetables and ended up cutting the inside of her hand as the knife slipped; she said she asked the support worker for help, and all she got was told to hold a towel on her hand and that it was her fault for not learning how to cut vegetables properly as an adult she should know how to do this. Chelsea ended up having surgery later that night as the cut was deep, and she ended up having a plastic surgeon have to repair the cut.

Tarnisah shared how shocked she was to walk in with blood all over the floor and bench. Chelsea passed out at the table, and the support worker was talking. She overheard this support worker say, " Oh, my client is pretending to have fainted over a little paper cut such a baby."

There was no action taken by this support worker, and Tarnisah called an ambulance for Chelsea; the support worker apparently invoiced for the extra time she was with Chelsea while waiting for the ambulance.

Tarnisah attempted to report the support worker who had been overcharging the entire time and yet hardly doing the work she was there to do. This was slowly depleting Chelsea's support plans. When she tried to find the right place to report the support workers' behaviour and her overcharging, she was given different phone numbers by other people and told that because the business is not NDIS registered, there was nothing they could do.; it became easier for them to move on.

Chelsea shared how she now has a "badass scar", and she is even more determined to be who she is to be herself.

As we move forward two years, Chelsea is now studying to become a social worker while she works on her singing and dancing. She is hoping to go to New York to sing in Times Square.

She has a support worker who works as a sole trader twice weekly to help her stay on track. According to Chelsea, the support worker is incredible.

I have heard many stories similar to Chelsea's over the years, and it is sad to hear that someone choosing to be uniquely them is judged and treated with so little respect.

Everyone has their own challenges in life, and living with a disability adds to that. there is so little that people like Chelsea and her mother, Tarnisah, can do to stop these providers.

We are working on our t-shirts and hope to release them soon. The sale of the Uniquely Me book raised funds for the Royal Children's Hospital Good Friday appeal, and we will soon donate to another charity.

If you would like to share your story or that of a family member or learn more about the Uniquely Me Project, visit our website, Break Free Consultancy, or contact us.

We would love to hear from you.

Written by Jacqui Grant

(C) 2024 Break Free Consultancy

Disclaimer: To protect Chelsea's privacy, we have used photos that are NOT hers.