What is disabling our daughter?

It is a powerful word, ‘disabling’. By its own definition, it would mean that someone who is ‘disabled’ lacks the ability to do anything. That is quite a frightening prospect for anyone.

But it is the process of ‘disabling’ which really interests me. Someone or something must have been the source of the disability. Is it the condition itself that forces the person in a wheelchair, or the rampless bus which the person can’t board, or is it the people who stare at the limbless man, the almond eyes, the slurred speech? What or who is disabling?

Our daughter, Trudy, had low muscle tone when she was younger, a condition associated with that extra chromosome which keeps rearing its ugly head. She couldn’t sit in standard wooden high chairs (popular in restaurants and pubs) without sliding through it like jelly and there was no chance we were going to feed her safely. So, we had to phone ahead to make sure that they had a plastic high chair with a cushioned insert and a bar between the legs. These were specific requests but, if they didn’t have one, we couldn’t go.

Trudy wanted to start gymnastics but we had to get a letter from her paediatrician to say that it was safe for her (appointments with paediatricians are not easy to get). She wanted to do dance classes but she had to wear tap shoes. Has anyone tried to get a hypotonic ankle into a tap shoe?! We started swimming lessons but the instructor said that we couldn’t go in with her because she was in the higher age group. I stated quite politely that she would drown if we didn’t go in with her. Needless to say, he let me in then. And then there’s childcare. We can’t just send Trudy to a holiday camp or a babysitter without having an in-depth conversation first in which we dissect and analyse Trudy’s needs.

Some of these things have to be in place to make sure our daughter is safe, like the paediatrician’s letter and the pre-activity chats. But the smart-looking high chair that doesn’t support the baby or indeed the backless swing at the park lead us to a swift conclusion: We can’t go out.

We can’t go to the playground because our child will just have to sit there watching the other children play, and that’s not fair. Have you ever wondered why there are few disabled people in parks? Lack of accessible equipment is a major factor.

We can’t go to the cafe because they don’t have the right equipment to feed our child safely.

We can’t go to that concert because our children can’t queue or stand the noise.

Or very sadly, we can’t go out because they’ll stare.

So, what is disabling our daughter? Well, it’s a combination of things. Her Down’s Syndrome prevents her from understanding, which means basic excursions are a challenge. The wrong equipment or the crowded places are an issue. But for the people who stare, who don’t understand that she is finding it difficult to wait or really doesn’t want to move, well, they’ve really no excuse in my opinion.

A person feels disabled when they can’t access the most basic of places such as the bus or the shops. So the buses have ramps and the shops have wheelchair-friendly trolleys, but not always. Blue badge users can park closer to shops but, who hasn’t been guilty of parking in a disabled spot when in a hurry?

A person feels disabled when there are too many barriers to doing what they want to do, like dance or gymnastics or swimming. Parents give up because there are just too many forms to fill in and nobody seems to read them anyway.

A person feels disabled when normal avenues are not available to them such as mainstream education or employment. Children are turned away from schools because they will be ‘detrimental to other children’*. Adults can’t get jobs because it requires just too much effort to adapt the workplace for a wheelchair user or a person with learning difficulties.

There is some great work out there and some great legislation around disability rights but, perhaps if we started considering the possibility that people are not ‘disabled’ but ‘enabled’, we might not assume what they can’t achieve and start concentrating on what they can.

*Standards in Scottish Schools Act, 2000

Why do I feel like I have to say ‘thank you’?

It’s the same feeling everywhere I go, at the park, at the pool, in cafes or at the supermarket.

If someone is nice to our daughter, doesn’t walk away, lets their children play with her or lets her take everything off the shelves in Tescos, I feel inclined to say ‘thank you’.

Thank you for allowing her to be herself, thank you for making my life easier, thank you for including her in your games.

Trudy is heading for her first year of primary school and I find myself feeling incredibly grateful that her mainstream school will accept her. Despite the reams and reams of legislation and rights-based discourse that I know like the back of my hand, I still want to say ‘thank you’.

Why is that? Is it because I know too much about what has gone before, when people with disabilities were shut away, disabled and disempowered? Is it because there are thousands of cases across the UK where children with learning disabilities are still not accepted into mainstream on the misguided assumption that they will be ‘detrimental to their peers’? Or, if they are accepted, it is with reluctance and lack of understanding. A child with DS was wearing a hi-viz jacket in one mainstream school because he was a flight risk. He may as well have ‘watch out for me’ written all over him, and not in a good way.

We are so eminently glad that Trudy’s rights to an equitable education are being upheld but I wonder when we are going to stop feeling grateful. Grateful for the opportunity to be part of society when her brother just is. Grateful for the chance to learn with and from her peers. Grateful to have peers.

I’ll remember to write again when I no longer need to say ‘thank you’, when her journey to acceptance is not shrouded in worry and doubt. Let’s hope this and so many other stories end well, that our children grow up as integral parts of our diverse and rich communities of people.

Are we living in a risk-averse world?

There has recently been a resurgence of discussion around pre-natal screening for Down’s Syndrome because of Heidi Crowter’s current case at the High Court, defending the lives of people with Down’s Syndrome and their rights to equal opportunities before birth. 

As you know, I was shocked and appalled to learn that one of our children’s lives was valued more highly than the other when we had the option to terminate Trudy up to 39 weeks and Patrick not after 24.  This is not a discussion about abortion rights or whether we, as parents, are pro-choice for women, but rather a discussion about equality and discrimination when we presume to inhabit a progressive world which is committed to the inclusion of people with disabilities.

It has forced me to reflect on our current situation with Covid-19 and how we are so eager to eliminate risk to such an extent that we would be prepared to terminate the life of an unborn child on the basis that that life carries too great a risk.  My question would be and always has been: ‘what risk is that exactly?’ True – from a scientific perspective, children with Down’s Syndrome carry greater ‘risk’ of contracting Leukaemia for example, of being coelic, of suffering from respiratory or heart defects. Our child doesn’t have the genetic markers for Leukaemia (yes, they check for that) or coeliac and she does not have a heart defect. Yet, we would have potentially deprived ourselves of this joy of a girl on the grounds that she could have contracted one of these life-threatening conditions. Patrick also carries a risk: a risk of heart disease, of contracting cancer, of suffering from mental or general ill health. We all carry risk to a greater or lesser extent depending on who we are and where we come from. Despite our best efforts, we will never be in a position to eliminate this entirely.

It seems to me that this law which allows us the freedom to terminate the life of an unborn child at 39 weeks is merely giving us the feeling that we are exerting some kind of control over the uncertainty of having a child with a disability. Just as we do in teaching when we complete risk assessments, we acknowledge the risk and then put in control measures to mitigate at least some element of that.

Isn’t this what we are doing in our response to Covid-19 – a million and one rules for different regions, settings and people to mitigate the risks of catching it? We are trying our best to ‘control the virus’. I am, in equal measure, committed to protecting the lives of our most vulnerable but, despite my better judgement, I am wondering how much of this virus can be controlled when I think back to how much I could control when our midwife placed our little girl in our arms and told us she had Down’s Syndrome. By putting all these control measures in place, we are mitigating the risk of the virus spreading.  A noble cause and one which is appropriate to the context as our individual actions have huge consequence on society as a whole. Or are those in power merely protecting themselves from reproach so that they can hold their head up high and think ‘we did our best to “save lives”’, or was that to reduce the risk of death?

By actively encouraging terminations of children with disabilities through legislation as well as practice, we can content ourselves with the thought that we are also reducing the risk of premature or unnecessary death. What we are really doing is altering the statistics to suit our model: the fewer people with disabilities = the fewer cases of serious illness or premature death = the better our lives? It is just like kicking the naughty kid out of school so that the exam results look better and, believe me, that happens!

By no means do I wish to advocate a Churchillian response or indeed Trumpian response to the pandemic by saying that we should all just get over it and stop being so risk-averse. The 21st century is in no way comparable to a world war context when science and medicine was not half as advanced as it is now. With greater knowledge and progress, we are burdened with the desire to eliminate risk. We must not allow the figures to remain as they are: People must live longer, there must be fewer deaths and people cannot get ill. In education, children must not fail, there should be no difference between an affluent family and a disadvantaged family, pass rates should improve. But what are we going to do when pass rates are at 100%? How will we measure our children then? How do we choose who moves on in academia and who follows a different path? Failure often leads us in a much more appropriate and satisfying direction. What are we losing through the avoidance of risk and failure?

As much as I am the first person to want to exert some control over the situations I face, having a child with a disability has taught me so much about what I can realistically achieve and the satisfaction I can get in just getting by.  I wonder how long we can live in our risk-averse world whilst we slowly lose our ability to cope with uncertainty and situations that are out of our control. A GP friend of mine recently said that the only thing we really know for certain about Covid-19 is that the future is uncertain, despite our best efforts to understand it. Our wonderful health practitioners are on the frontline just doing what they can to protect lives with the weight of accountability on their shoulders. That should be enough for us right now and I leave you with this, written in my diary at a conference by Heidi Crowter herself: “Hiya Lauren! Stay happy and always look on the bright side!” No simpler but truer words have ever been said.