Late in her pregnancy, Grace had a feeling her baby was in trouble. She took herself to hospital for some monitoring, but after checking the fetal heart rate, medical staff concluded that everything was fine. This was 17 years ago, before 3D scans had become routine and readily available. Grace accepted the advice and went home, but disquiet settled over the remainder of her pregnancy.
Elijah was born with his umbilical cord wrapped six times around his neck in a true knot. It caused severe damage to his brain, resulting in quadriplegia cerebral palsy. Grace, who was 23 at the time, was told that it was very unlikely that he would survive, and if he did, he wouldn’t be able to see, hear or recognise her. She was advised that his quality of life would be too low to justify.
‘Says who?’ Grace asks me over Zoom, 17 years later, fresh from dropping Elijah at school. ‘Who’s to say what the experiences of each one of us should be like? Everybody’s different, has different experiences of life. Everybody wants to be seen and valued.’
Elijah has curly hair like his mum and a grin that can turn your day around. He can see and hear. He doesn’t just recognise Grace, he loves her deeply. He likes playing the drums. He’s a wheelchair user, he’s thriving and loves his life.
Grace’s experience as a parent directly informs the work she does. It’s a big part of why she founded the collective BE. a creative hub for young freethinkers and BE. ONE CREATIVE. BE. is a place that celebrates difference, creativity and gives voice to young people through a multitude of ways. BE. ONE is a creative agency that not only champions expressive and young people’s work, but also allows for that knowledge to be passed on through their mentorship program for young aspiring creatives.
Hey Grace! What was your morning like?
Grace: My day starts at 5am. It means I can get things done and have some time with Morganne. We’ve started going for little walks together. We go through the parklands near our house. There’s no one around, and everything is so soft and tender. The birds are beginning to sing. You might hear a kookaburra, a couple of frogs, but apart from that, everything’s quiet and sleepy. It’s really special.
At the end of the day we’re completely exhausted, and I have my hands full with Elijah. I mean literally my hands are full. The care I need to give to him includes lifting him, changing him, dressing him and tending to him in that way, then I’m smashing out work for BE. while he’s at school, but that morning walk is just mine and Morganne’s.
What’s a typical evening like at your place?
I pick up Elijah at 3, and then it’s all hands on deck until his bedtime at 7. We have dinner together as a family and afterwards I give Elijah a massage. I get his legs out of his wheelchair and rest them on me while I massage them. He loves that part of our daily routine. Touch is such an important and beautiful thing. It gives him a little bit of relief, too, because he’s been sitting all day. It’s a special time for us to bond. He can’t articulate if something’s sore. He’ll communicate to me if something’s really bad, but his pain threshold is so high. He’s used to having niggling discomfort.
How do you and Elijah communicate?
The way that we communicate is through intuition. That’s something to be said for mothers in general. We’re so deeply connected to our children. Elijah understands a lot more than he can say, but because of the extent of brain damage that he had, he also has an intellectual disability. But we’ve been communicating with each other since before he was born. We have our own language and it’s deeply connected.
My experience as a parent directly informs the work I do at BE. I’ve learned huge lessons and I’ve come through the other side of these very complex challenges without a handbook – of course it’s an ongoing and ever-evolving life but now I know how to project my voice when I need to. I also understand the importance of surrendering, and trusting the pathways that life has given me. And don’t get me wrong, it’s really hard sometimes. Especially for people with a disability or people of colour, bla(c)k or Indigenous people, like myself. There’s a lot stacked against you from the get-go. But I’ve been given these tools that I can give to others, so that’s what I do, and I believe a big part of what we’re here to do.
What does next year look like for you and your family?
Elijah finishes school at the end of this year. I’ve been very overwhelmed thinking about what’s next for him. How will the outside world view him and welcome him? How will he take pride in what he’s able to contribute? Who will give him a chance? Will he ever be able to go to the footy and pay his own way? He doesn’t have those opportunities unless I create them for him, so what does this all look like?
Our society is so ableist and doesn’t really embrace or respond well to people with disabilities. We haven’t learnt how to do that. We don’t have important access to people with special needs, so the stigma builds up. We’ve got to smash these stereotypes around who is “normal” and “not normal.” There’s no such thing. Such a journey of “undoing” that needs to be done.
The National Insurance Disability Scheme (NDIS) was given a bunch of money in this year’s budget. Will that be helpful to you in any way?
To some degree, yes, however it’s a real battle to advocate for the requirements and needs for Elijah. Everything they’re affiliated with is privatised. It costs Elijah $870 for a night in respite care, for example, just so I can have a night off. Or go out on a date with my partner. Before NDIS, it was $560 per night. They’ve increased the price so much, because they can. There’s greed at the core of it, not humanity. It’s ridiculous how much everything costs.
I fought for years for Elijah’s standing wheelchair, so he was able to be upright and have the autonomy to change his position of his body with the aid of this amazing wheelchair. Years. I had support from a number of MPs, even a Greens Senator. In the end I showed up with a team of medical experts and Elijah, too, so they could fucking see his face and be confronted with him, as a person. Not a case number. They ended up overturning their decision, but that’s how much effort it took, to be granted something that he is clearly entitled to and that will benefit him greatly.
What’s it been like going from a two person family to three?
Elijah’s Dad and I split up when Elijah was little, so I’ve mostly cared for him on my own. What we have is very sacred to me, so the person who came into it had to be pretty bloody special. I’ve worked really hard on my own reflection of love, recognising areas I needed to work on and undo a lot of the adopted heteronormative world, and look at what love really is.
Then along came Morganne, who is a proud trans man. I think I’ve always been a queer person, but I had a fairly heteronormative outlook. I come from a generation that didn’t have the language around identity that we have now. Morganne and I just connected. He’s half Jamaican, half black, like me. I love that my partner can identify with my cultural roots and what it means to be black and on the outer. He prioritises community and family in the same ways that I do and views life on a deeper level.
Morganne has a rescue dog (Buzz) so when we came together as a family unit, it all made sense, with each of us navigating life as an outsider and actively smashing stereotypes. It’s been really hard, beautiful and easy. All at the same time.
Morganne has beautiful sensibilities and a tenderness that allows him to connect deeply to our lives and apply this to his work as a dog walker/adventurer – but he can also smash out caravan walls.
I saw you guys got a caravan! Any trips planned?
We’ve got to make it accessible for Elijah first, that’s something we’re working on together. It’s a labour of love. And maybe a weekend trip here and there for the two of us if Elijah is in respite care. It’s so hard to find an accessible property, unless we go to a fancy hotel, but that’s not a feasible option, I also like to cook and be in nature when I go away.
Our ultimate dream is to buy some land and create a fully accessible and creative space, where we could build our dream accessible home and build fully accessible guest houses. On the property there would be private healing rooms, studio spaces where we could have artist residencies and creative workshops, and people could host retreats such as creative writing, painting, etc. I want a gallery/museum and a large space for talks, conferences or classes (like yoga and mediation).
There’s such a need for a space like this to exist – where nature surrounds us, where healing can occur and where creativity can be harnessed and explored and where people who have a family member with a disability or special needs can seek respite and a getaway. I know this is a big vision but this is what I’m manifesting!
I feel certain you’re going to make that happen… What brings you joy?
Being a mama brings me joy. My culture, aunties and sisterhood bring me joy. Massaging my son’s legs brings me joy. Bathing my son brings me joy. Being of service to people brings me joy. Holding space for people brings me joy. Wholesome, critical and inspiring conversations bring me joy. People mobilising brings me joy. When I see people show up at a rally because they care about someone other than themselves, when they feel compelled to say: Enough is enough, that brings me joy. We’re shifting the paradigm and that brings me joy.
When it comes to political and social oppressive structures, it’s especially important that privileged people, those who benefit from those structures, are joining the fight. I feel hopeful because I see all these younger generations standing up and pushing back. We’re making ourselves actively responsible for each other. Most people just need an opportunity to do better, and they will.
Weekend getaway? Oh wait…
Lol. Not applicable. We can’t find accessible properties to go away to, so it’s not something we do.
Everyday Coffee. We especially love their coffee for home, because we can’t always get over to Collingwood.
The Whitney Houston radio station on Spotify. It has Mariah Carey, Lionel Ritchie, Luther Vandross, everyone you need, really!
Sunday morning breakfast ritual?
We often do a big cookup: eggs, greens, roasted tomatoes and mushrooms, whatever we’ve got in the house. Cooking is cathartic and such a loving act for me.
Between 6.30-7am I mediate. We have an east-facing window in our living room. I watch the sunrise. It’s nice.
November 13-19 is Trans Awareness Week, and November 20 is Trans Day of Remembrance, which honours the trans lives lost as a result of discrimination and transphobia. Learn more here!