This is the story of Ally from a Carefree break for an Invisible Army exhibition.
Discover more about the full exhibition in our Carers Week 2025 round-up.
For Carers Week this year, we launched a photography exhibition that showcased the real stories of unpaid carers and the respite breaks they were able to take thanks to us. The exhibition, in partnership with Invisible Army, was created to capture the everyday challenges and joys of these amazing individuals. Now you can read their stories right here on the Notebook!
Ally's Story
Ally works full time for Transport for London, and Nazlee works part time in their local Tesco.
"Say how long you’ve worked there," laughs Ally.
"Forty-five years in the same store," Nazlee says, smiling with pride.
"We both work with people, which we love," Ally says. “I’ve had to make sacrifices at work though. Because of caring for our son Bashir, I couldn’t get a promotion. I enjoy looking after him, but it can be difficult to juggle employment and caring.” Both Ally and Nazlee are very grateful to their companies and colleges for all their support, which has allowed them to stay in employment while caring.
Bashir is now 31 years old. A typical morning begins when he comes down the stairs asking his parents, “How do I look?”, proud that he can now get dressed on his own. It can take up to an hour, but for Ally and Nazlee it is important to be patient so that Bashir can build this independence. “We love seeing how proud Bashir is when he can complete a life skill on his own,” says Ally. “We’re also thinking ahead to what will happen when we’re no longer able to provide his care.”
Bashir sits in the same chair he has used since he was a little boy – they each have a specific seat, otherwise he becomes distressed. Ally has already prepared his morning drink, medication and tissues. Bashir is rigid with his routine and his space.
“What would you like for breakfast?” asks Ally.
“Peanut butter on toast and hot chocolate,” Bashir replies.
“Hot chocolate, ah yes - a Sunday treat,” Ally smiles. “Would you like a croissant too?”
“Yes,” says Bashir.
“You like dessert with every meal!” laughs Ally.
He goes to the kitchen and opens a cupboard which is full of everything Bashir most commonly asks for - his favourite things. They call it ‘Bashir’s corner’.
Hanging on the wall in the living room is a poster entitled, ‘Bashir’s Mission’. It reads, “To provide a good quality of life. Supporting Bashir to build independence in his regular tasks in the best possible manner. To bring back his energetic wellness.”
Bashir has Down syndrome and autism.
“We treat Bashir as the unique person that he is, we wanted to make sure he had opportunities to allow him to thrive and not be defined by diagnosis” shares Ally. “As soon as we found out Bashir had Down syndrome, we researched and made as many connections as we could. We were lucky. A girl with Down syndrome would pass our window while walking to school. Bashir used to watch her each morning. We connected with her family, and he later went to the same school she did.”
Bashir stayed in mainstream school, but near the end of his education, he was bullied. Ally and Nazlee watched him face this situation each day.
“The Bashir we knew before the bullying is not the same as Bashir now,” says Ally. “His disability has never been a challenge, but the emotional toll of bullying during adolescence affected him deeply, it was very difficult for him and for us. He used to lash out and, as his parents, There was little understanding from professionals of how trauma of the bullying and experience at school might affect his behaviour and we were often judged rather than supported. He would throw things and hit us. He lashed out at Nazlee.”
Nazlee used to receive a call from Bashir’s college if he was on his way home in a negative mood. She would have to stop what she was doing- turn off the cooker if she was cooking - and go upstairs until he calmed.
“We were told we couldn't keep him at home as he was a risk,” says Ally. “But we just needed help. We wanted him home, but to do this we needed support, including for Bashir to be able to access more in the community.”
Ally noticed a lack of holistic approaches to care. “Using music and art is fantastic as it needs no verbal language,” he explains. “But you need to make community and activity groups happen. I’ve learned that you can’t wait for your local authority to do it.”
Ally created a club called Upside of Down. Here, they believe everyone has skills, talent and ability and that we need to look at what people can do rather than what they can’t. The club hires professionals to deliver quality activities, from dancing to other art forms. “Our aim is to promote real inclusion without barriers,” Ally explains. “Inclusion is often spoken about, but it often feels more like segregation to me.”
He feels that people's talents should be used within their support. As an example of this he says, “Bashir likes music, so we thought he could learn to dance and then work in the dance industry. Bashir now lights up when he’s dancing and loves connecting with his peers.”
People say to Ally, “Sorry you have a disabled child.” His response is always the same: “There’s nothing they need to be sorry about. We love Bashir exactly as he is.” This attitude from people often reflects how disability is seen as something to be sorry about instead of appreciating human diversity.
“We have a great care plan now,” he explains. “I provide care agencies with a job spec to find workers for Bashir. He has three regular care workers now. It works well until one of them leaves, which can set him back. However, it's lovely when he makes friends with his support staff.
My advice to other carers would be to research and network. Initially, I felt that we were the only ones going through this, but there are others to learn from and be inspired by. For me, fairness is not about giving everyone the same things but about giving everyone what they need to thrive.”
Over the 31 years of caring and advocating for Bashir, Ally has become part of many organisations including the Downs Syndrome Association and Carers UK, along with running the Upside of Down club. He hopes that the support he gives will then prompt that person to help someone else, and so on, so that the kindness will ripple. He often says, “Don’t thank me - go and help someone else.” He shares, “None of this would have happened without Nazlee. She is currently recovering from breast cancer. It was a sad and scary time and had a serious impact on our family, but with the support of extended family, we coped. I know that Bashir was the reason she was motivated to fight back.”
While on a break that Carefree facilitated, Ally and Nazlee couldn’t wait to share some recent news: Through Carers UK, they have received an invitation to a garden party from His Majesty the King, to thank them for all the work they do - not only for Bashir, and them as carers but for helping families and communities build a more inclusive world together. “Being a carer has been so challenging at times, but we’re very grateful for these opportunities,” says Ally. Nazlee laughs, “I can't wait to buy a nice frock.” During their break they go shopping, out to dinner and then finish the night seeing a theatre performance. “The show was really wonderful,” says Ally. “I feel like a superstar. I want to inspire carers to know that they are not alone and people with disabilities are more than their diagnosis and can achieve so much.”
Catch up with a Carefree break for an Invisible Army exhibition
To read the rest of the stories and find out everything else Carefree got up to during Carers Week 2025, check out our round-up below!
(All photo + case study credits: ©Invisible Army)
