On World Down Syndrome Day 2021 I want to share with you some of the experiences I have had of being a mother to the beautiful Betsy Iona over the past 3 years. This little firecracker burst into my life and filled me with a strength and energy to protect and fight for her. Which is fortunate, as you will soon find out.
You see, I am not treated in the same manner mothers of typical children are. Betsy is not treated as an equal to non-disabled children. My experience of motherhood has been largely defined by having to rise up and battle for us both.
While you were at your midwife appointment gazing at a scan of your baby, marvelling at them kicking and waving, I was sat in a bare, white room in a Fetal Medicine Unit, in Newcastle. Yes I had had a scan and was overjoyed at having seen Betsy wriggling away on the screen, but I wasn’t allowed to celebrate that. While your midwife, cheerily said ‘Let’s measure your baby and see how she’s growing’ my consultant wouldn’t use the word baby. After a diagnosis of Down’s Syndrome, my baby was dehumanised and stripped, not just of her name and identity, but her very humanity. She was referred to as ‘the fetus’.
Her name is Betsy Iona.
While you were encouraged to bond with your baby, play her music, sing to her and talk to her, I was told to go home and think about whether I wanted them to abort my ‘fetus’ at 7 months pregnant. Your midwife was planning for the birth of your baby, giving you advice and information on how to make it safe and good for you. My consultant had already discussed a late term abortion of my baby with his colleagues and authorised they would perform it, all without my knowledge. You were involved in every aspect of your care. I was ignorant of the discussions taking place around my daughter’s death being planned.
Her name is Betsy Iona.
When you gave birth you were congratulated on your beautiful new baby. When Betsy arrived into this world we were in love with how tiny and perfect she was, yet not one single person in the room said congratulations. ‘Baby is here’ is the one phrase I remember.
Her name is Betsy Iona.
While you lay in your hospital bed with your baby by your side, marvelling at them, I sat next to an incubator in a neonatal intensive care unit. While midwives came and offered you support, consultants leading a ward round headed towards Betsy’s crib stating ‘This is the Down’s Syndrome baby’.
Her name is Betsy Iona.
While you breezed into your local mother and baby group a few weeks after being home, I turned up 2 months later. While you chatted with your friends about weaning and tummy time, I was singled out by the group lead as different. While you discussed baby food I was told I had a ‘Down’s Syndrome baby so the information in these sessions wasn’t relevant to me’. I left. I never went back.
Her name is Betsy Iona.
When you chose her first pair of shoes, I spent a year and a half fighting the discrimination in the NHS to get my daughter an orthotics appointment for her wobbly, hypermobile ankles. A year and a half of phone calls, letters and complaints to finally get the appointment of which the outcome was, ‘Yes, Betsy needs prescribed supportive footwear.’ Perhaps if she hadn’t been denied her right to healthcare as a result of having Down’s Syndrome, she would have been able to walk sooner and access activities other children can. The excuse that ‘children with Down’s Syndrome often have hypermobile ankles that make their feet roll in’ is not a reason to deny orthotic treatment. It is discrimination.
Her name is Betsy Iona.
While you visited the school you wanted your child to attend, and looked forward to them starting reception, I sat in a meeting with my local first school being told my daughter was best off going to a special school because she has a learning disability. While your child’s education was a given, my child was assessed on how much money and effort would be required to include her and then she was thrown on the scrap heap. While you skipped merrily out of that school, planning packed lunches, I left in tears. Frightened and lost about how my daughter was going to get an education.
Her name is Betsy Iona.
When your child started their first day of preschool, in their new uniform, my child did not have a school place as a result of her local council refusing to assess her for an Education and Health Care Plan, which would give her the right to apply for a place at the school that were open and enthusiastic about investing in her future. While you watched your child grow and learn, I spent almost a year in confrontation with the SEND team at our local council fighting to get them to let my daughter attend school. Phone calls, letters, meetings, complaints. All to get my daughter the funding and support she is legally entitled to that would enable her to walk through those school doors.
Her name is Betsy Iona.
While you feel secure and calm in your child having a smooth life, I now see the barriers placed in her way. I see the prejudice, the bias and the discrimination deeply engrained in our society. So I joined the boards of organisations who work to give people with learning disabilities equal human rights. I left my career as a teacher and transferred my skills to writing about human rights for campaigns that make a difference. I write to members of parliament, newspapers, people who can drive forward change. I stand in between Betsy and the bias.
This is my motherhood.
On World Down Syndrome Day 2021 I’m not sitting looking at a bunch of flowers, eating cake. I’m writing about my reality. This could be different if we afforded people with learning disabilities equality. Then mothers could be mothers, rather than trying to be campaigners, advocates and lawyers. We could just be mothers!
So true and so well said Rachel … here’s to equality and celebrating the diversity of our beautiful children on World Down Syndrome Day!