A mom has gone viral for calling out parents for telling their children not to stare at her disabled daughter.
Megan Gillett, 36, posted a reel on Instagram asking parents to reconsider how they approach interactions with Nellie, who has metachromatic leukodystrophy (MLD).
Gillett, from Eastbourne in southeast England, told Newsweek the instruction “don’t stare” eliminates curiosity and connection.
She said: “I always feel like ‘don’t stare’ shuts down a possible interaction between their child and mine. It is the opposite of inviting, it eliminates the chance for curiosity and connection.
“[If parents say] ‘go and say hello’, then it’s opening up interaction. For me, ‘don’t stare’ reaffirms the culture that disability shouldn’t be looked at; hidden.”
Mom Megan Gillett wrote in her Instagram caption that she heard five separate parents telling their children not to stare at her disabled daughter Nellie Sunshine Oakshott.
@meganpg11
Nellie, who was diagnosed with MLD at two-and-a-half, is unable to walk, talk, eat or drink because of the disease, which is both progressive and terminal. In Nellie’s case, Gillett told Newsweek that she quickly lost the ability to walk and talk, and now faces cognitive challenges, daily sickness and involuntary muscle spasms and contractions.
“It affects her in every way a disease could but still she smiles and is brave,” the 36-year-old added.
Gillett, who is also mom to one-year-old Ozzy with Tom Oakshott, 40, emphasized that allowing children to express their natural curiosity can pave the way for greater acceptance of disabilities.
“If we keep telling children not to look or avert their eyes, it doesn’t give them a chance to think that’s just another child who uses a wheelchair instead of their legs or they eat through their tummy rather than their mouth,” she told Newsweek.
Since it was posted on June 20, Gillett’s reel has clocked up almost four and a half million views, with many social media users praising Nellie’s mom for bringing more awareness to the topic.
“It really made me think about how I’m going to talk to my son in these situations,” one user commented, while another confessed to being part of the “don’t stare community”: “Thank you for teaching me this… I had no idea how that contributes to the negative side of the conversation.”
The reaction to Gillett’s reel has been mostly positive, but she also acknowledged that not everyone agrees with her. Some families, particularly within the autism community, shared their concern that their children could be stared at during moments of distress.
Gillett understood the reasons for alternative views and told Newsweek that she wasn’t insinuating children with autism be stared at if they were having an episode of stress.
“I understand because obviously autism doesn’t manifest in the same way as MLD, for example,” she added.
Ultimately, Gillett believes that the conversation about disability should start from an early age.
“I feel that disability acceptance starts in playgrounds, nurseries and schools. The more we allow them [children] to look, be curious, then the more opportunity they have to see normality and it isn’t something to be afraid of,” she told Newsweek.
