In this episode we learn about Phoebe from the perspective of her father, Matthew. Phoebe is a nine-year-old girl who happens to have Down’s Syndrome. Matthew recounts his experiences of what it is like to raise a child who is so often labelled by her condition.
Matthew begins by describing the sometimes frenetic nature of life at home. As a result of lockdown, he and his wife were homeschooling 4 children, all at different ages, which could certainly make things challenging. One of the wider challenges Matthew attempts to confront, however, is the way in which his daughter, Phoebe, is often pigeon-holed. Matthew quotes one person as saying: “At least they’re very loving.” He also recounts another person who had been watching Phoebe playing with another child with Down’s syndrome as saying: “I love Down’s Syndrome kids, they’re so happy.” On the surface, these may seem like harmless comments but it’s the labelling of Phoebe and other children with Down’s Syndrome that Matthew objects to: “My daughter is not a Down’s Syndrome kid, she is a girl who happens to have Down’s Syndrome.” Matthew goes on to say that Phoebe is not always loving or happy: “there are other emotions in there like any other little girl.”
Matthew also wishes to challenge other elements of the language people often use around Down’s Syndrome; namely, the idea that his daughter “suffers from” Down’s Syndrome: “she doesn’t suffer from down’s syndrome, using the term “suffer” means that people feel pity for her and will not include her in typical life.”
The strength of Matthew’s feelings over the issue led him to write a social media post in which he expressed his frustration at the way his child was so often labelled. Matthew says that he wrote his post in the “hope that it might raise awareness with other people and make them realise the way they put people into boxes without even recognising it.” He has received a strongly positive response to his post from parents around the world caring for children with disabilities who similarly have had to deal with the labelling of their children as conditions or illnesses.
Matthew’s expression of his feelings are not just based on a desire to generate common consideration and respect, there is a practical element to what he wishes to achieve. He fears that the labelling of his daughter will lead to her exclusion from many elements of everyday life, something which will inevitably prevent her from living as full a life as she may be capable of achieving: “The more chances that people get, the more they thrive and succeed, so if we can be a little bit more understanding and supportive, who knows how things might end up.”
Matthew describes his daughter as considerate and conscientious and fully believes that with the right support and opportunities, as an adult, she will be able to live a fulfilling and independent life. He concludes by saying: “As we start to challenge some of these stereotypes, more of these opportunities will start to reveal themselves as well.”
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