“You can’t be that disabled”: How one mother navigated the challenges of invisible disability
Life can throw plenty of curveballs – but with support from Feros Care, one proud mother and son duo are carving their way in the world, ready to make a difference.
Matenah* is a strong West African woman that has been heavily impacted by her disabilities – including Postural Orthostatic Tachycardia Syndrome, vertigo, fibromyalgia, chronic fatigue, PTSD and ADHD.
She was raised in a refugee home where she admits she “wasn’t allowed” to be disabled, in a world that very much caters to those who are able-bodied.
“People thought I was ‘cuckoo’, that I wouldn’t amount to anything,” Matenah says. “I was denied counselling. My mum thought I had to be hidden away. But I decided, years ago, to fight for myself and my baby.”
Her young son, Siaka*, also has complex disabilities – level three Autism, ADHD, epilepsy, anxiety and a presentational intellectual disability.
The two of them escaped domestic violence and now live alone. With their needs combined, and no support available from family or friends, Matenah admits that she was “pushed to the edge.”
“I couldn’t even sleep,” she says. “I would share a bed with my son, looking out for his seizures and night terrors. He would kick, punch me, wet the bed. I couldn’t take him to the bathroom because I’m a fall risk, I don’t have the energy, we’d both be sleeping in a wet bed.”
It was simply impossible to keep up on housework, washing and cooking, let alone any of the work and fundraising projects Matenah is so passionate about.
Help came, finally, through Feros Care – and their lives have since taken a drastic turn, in the most positive way.
Seeking the answers
Matenah is quick to acknowledge her privilege. She is culturally and linguistically diverse but speaks English, has system literacy and is happy to advocate for herself; and yet she was overwhelmed by the amount of information required to get the support that she and Siaka needed.
She also had a distrust of the process, having faced previous discrimination from service providers.
“There are people who have tried to take advantage of me before, assumed that I wouldn’t know my rights because English is not my first language,” she says.
“For someone like me, with an invisible disability, there’s the added element of people gaslighting me – saying things like, ‘you can’t be that disabled.”
Her Feros Care Local Area Coordinator (LAC), Emily, was quick to act as the bridge between Matenah and the NDIS, helping her apply for a change of disability to reflect her true disability – and proving the benefits of having someone in your corner.
“I was ready for a fight, but there was no fight needed,” Matenah says. “Instead, I found a soulmate on the other side of all this stress.”
Emily has extensive professional experience combined with personal experience; she has a auditory processing disorder, along with three children on the autism spectrum.
“I’m happy to be the person that fights for change, and it helped Matenah to know that we all go through the same things – it’s just different based on the individual and their circumstances,” Emily shares.
“I understand the NDIS and I also understand that people need early intervention. And now I’m really happy that we’ve come to the point that we have.”
Emily and Matenah worked together to get an NDIS plan in place, going through the guidelines of what was required.
“I thought there were thousands of things we needed to do,” Matenah says. “Emily said, ‘let’s just go through one question at a time’. She knew where we needed to go, what we needed to get there.”
The plan did take some time, but Matenah says Emily would call and check on her regularly; “she listened to me, validated me.”
Her experience was so positive that Matenah asked if Emily could also support her son. And with more funding now available to each of them, Matenah can access the support they need.
She has since accessed a recovery coach and had smart home technology installed throughout the house. Support workers come regularly to clean, wash the sheets and take Siaka to activities such as swimming, football and dance classes while Matenah rests.
“I can have what I want, and don’t have to struggle anymore,” Matenah says. “I don’t have to hold back in meeting our family needs. I have the support I need, the respite I need, and the funding to do it all.”
“We can do the things we love, and I can pick up work again.”
A bright future
Matenah looks forward to a future where she can continue to work with Emily and build on the support available to her.
She is currently in the process of looking into overnight support, ensuring that she can get a great night’s sleep while someone looks out for Siaka.
“I pinch myself because I can’t believe how far we have come,” she says. “That wet bed can now be changed every day so I’m not impacted emotionally. I can even look for a bed suitable for someone with my needs – with waterproof bedding, and the right temperature.”
“There’s now an entire week of activities for my son to do and there’s no limitations.”
Matenah is excited to continue with her efforts in helping our most vulnerable and those doing it tough in our community, and in supporting other families as an advocate.
“Having my basic needs met means I have the energy to do what I love, and the world will be a better place for it,” she says.
“I am not my disability, I am so much more than that list of diagnoses; but I am utilising what is in my power and making it the answer, because I choose not to be defined.”
* Names have been changed for confidentiality.