People who have a Disability or Special Needs have no Quality of Life!

Last year COVID brought to the forefront how society views people who have a disability or special needs- that their life is deemed less important than a person who has no disability or special needs. Why do I say this? Well, there was a lot of talk about priority of beds if the hospitals became full and the Do Not Resuscitate (DNR) orders. If a person was ‘fit and well’, they would get priority over my daughter due to her Special Needs and Cystic Fibrosis and a DNR order due to her CF. It has been brought back into the spotlight due to Jo Whiley tweeting that her sister with learning disability had to wait as she came under No6 in the priority list, yet Jo had been offered it. Her sister is now in hospital with COVID, fighting for her life. So, who then assesses quality of life and what determines quality of life? Let’ first look at what quality of life means- in the English dictionary it states the degree to which an individual is healthy, comfortable, and able to participate in or enjoy life events.. Within the arena of health care, quality of life is viewed as multidimensional, encompassing emotional, physical, material, and social well-being. I totally disagree with both analyses as I draw from my own personal experience.

My brother had Duchenne, Muscular Dystrophy, a muscle wasting illness. With the definition above, it means my brother did not have a quality of life as he was not ‘deemed’ healthy or able to participate it and enjoy life events. This is a completely untrue. How I see it, is how the person’s take on life is and how they see themselves. What I mean is someone who is physically and mentally well may not live life to the full but my brother who was in a wheelchair lived it to the fullest and enjoyed life events. His disability didn’t stop him doing anything. He travelled to different countries, he went to the cinema three times a week, went swimming twice a week, he enjoyed life and never complained. My brother taught me the true meaning of the life. If he hadn’t been in my life, I wouldn’t have truly understood life and like most people would have done the tick-box page that society expects, go to uni, move out, get a job, buy a house, find someone, get married and have kids. But he taught me to choose my own path and if those things happen great, icing on the cake but don’t need to do those things to have lived life. I have done things that I wouldn’t have done if he wasn’t in my life or be the person I’m today. Some people live a life chasing the dream or in a job they hate but just because they are healthy and can participate in life events means they get priority in living. This is wrong. Shouldn’t it be that actually makes changes so that these people can access life events? Then there are major health inequalities for people who have a disability. This is the only way I can compare it. So,say if my daughter didn’t have Cystic Fibrosis, one of the illnesses that is deemed extremely clinically vulnerable but then a peer her age does, they would get the vaccination even though they are not disabled (I’m talking about the ones who are ‘well’). Yet they understand the importance of socially distancing and wearing a mask as they don’t have a learning disability. Yet my daughter does not understand social distance in general, forget the pandemic. One of her targets at school was space awareness! So, shouldn’t she then be a priority to have the vaccination like Jo Whiley sister should have? Or in the category as the extremely vulnerable at least. Just like Jo Whiley’s sister, my daughter can’t stand the mask over her face, she fights and screams when she has her nebs twice daily. She hates the smell of the mask and the noise and the feeling that she can’t breathe She gets so anxious for her blood tests; she bursts her veins and so even the phlebotomist gives up too. Layla gets extremely anxious if she doesn’t know what to expect or if people say one thing and do another. When a person who has a disability dies, society judges and says at least they are in a better place, now you can live your life, at least they are not in pain. These comments are based on what you think you know from society’s views, not on that individual’s life. Every life is valuable, every life has quality of life. It’s what you make of it so please don’t make a judgement on what you don’t know.