The new crime of infantilisation

It’s 3am. Your daughter is kicking her legs and giggling. You drag your weary ass out of bed and try to work out what she wants as she can’t explain – so you change her nappy, you offer a drink and adjust the bedding.

But your daughter is not 6 months old. She’s 20. And that’s years, not months.

So perhaps her mum can be forgiven for not always treating her like other adults.

Because I am her mum, and I do get it wrong sometimes.

“You talk to her like she’s a baby!” said my son to me a few years ago. And I realised he was right. I certainly didn’t talk to my disabled daughter B as though she were a typical teenager. But in my defence, she wasn’t, and while I’ve tried to change in deference to her age, it made me a bit sad to stop doing something she seemed to enjoy. I was reminded of that conversation again last year when I saw a tweet accusing parents of infantilising their adult disabled children, because they were opposing the closure of the campus-based homes where the adults currently live and moving them into small houses in local towns. This is Government policy in Ireland.

On further investigation I soon discovered that infantilisation is a big issue in the disability community.

Key complaints include using baby talk, over explaining concepts, talking to a carer instead of the disabled person, not listening to their opinions and over protecting them.

This kind of behaviour must be very upsetting for those with physical and sensory disabilities, and mild to moderate intellectual disabilities. And I regularly read articles by well known journalists that annoy me with the way they portray disabled people. But are all these concerns relevant for those with severe to profound disabilities?

What I’m seeing is that there is a tendency to pretend that my daughter has more abilities than (I wish) she has, and that might lead to her needs not being met, facilities not being provided, and a nod of the head being taken as agreement, when its just her weak neck muscles.

And most bittersweet of all is that although my 20 year old daughter has matured in some ways, she retains several traits and reflexes that are normally only seen in infants and young children. I was going to list them here, but perhaps that would count as infantilisation too?

I find it hard to accept that my daughter is exactly the same as all the intelligent articulate disabled people who may claim to represent her in the media, in policy making, at meetings and protests. I listen to all the policies being put in place for disabled people, and all the rights being asked for, but they don’t seem very relevant to her needs.

Disabled people do not want to be defined by their disabilities, but rather by their abilities, and that is fine by me. They don’t want to be described as vulnerable, and that is fine by me. They point out that all humans have the same needs for food, shelter and love, and that is fine by me too, but my daughter requires so much more help than they do to get her needs met.

Disability is now the preferred term for everyone who has additional needs, but the general public seem to assume that it means that someone can lead a normal life once they have a suitable wheelchair, home, personal assistant, equipment and accessible places to go.

Ratification of the UN Convention on the rights of people with disabilities should help with all those things, but not rights to a day service, respite, life time planning or transition to independent living, and no-one has told me how my daughter’s life will improve. Yet I’d love to know!

Take independent living. It’s being suggested that disabled people who live with their parents should be counted in the homeless statistics, because as adults, they should be living in their own home. I get that, but looking at all the options and the current policy of placing disabled people in little houses in the community, I would not be able to sleep at night. I’d rather continue sleeping in the alcove in the kitchen just yards from my daughter, so I’m there when she needs me at 3am. Or if there was ever an emergency, I can get her out quickly. I will do that for her. Would anyone else?

My daughter is also being gently eased out of the day programme she loves into ‘the community’, under another policy of the Irish State. Go to any shopping centre during a weekday and it is full of disabled people ‘in the community’. I am going to try and make it work for her, but I fear her enjoyment of life will be reduced and the improvements I’ve seen in her social skills will be lost if she ends up spending time away from her friends and familiar surroundings.

Yes trying new things is important, and both I and others in her life ensure  it happens all the time. But it has to be at a pace she is comfortable with, not one ordered by the State and its stupid one size fits all policies.

If you can read this this and object, you are very lucky. My daughter cannot read nor would she understand its complexity. Previously I would have explained that by giving you her mental age, but apparently that is no longer acceptable either! Yes she is an adult, yes she has years of experience, and a scatter of different abilities, but she also has many of the needs of a very young child, and someone has to ensure those needs are met. I’m afraid that only a mother would be willing to do all that needs to be done.

If all this adds up to infantilisation of my daughter, I make no apology. But I hope for forgiveness and understanding. All I’m doing is trying to ensure that my daughter has the best life possible.

 

 

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12 thoughts on “The new crime of infantilisation

  1. I went to a fundraising even for ALEH last night. I was thinking about you and B the whole time. I wish you were here and had campuses like ALEH to choose from.

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  2. I was having a conversation with my son’s clinical psychologist today and spoke of my fears for his future. She understood. He doesn’t fit in the neat boxes of development. So far we can create a great world for him but the future is scary. I often read comments online that parents should not speak for their disabled children as other disabled adults can do it better. But how can an eloquent, able, independent disabled stranger speak for my little boy with complex needs who is afraid of many things in the world – including strangers!

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  3. This is something I do worry about for the future (if my son survives to adulthood). I want for him to be treated as he is rather than as somebody without cognitive challenges has decided he should be. It saddened me a while back when another parent of a child with MPS was told that their daughter should not be using a Disney bag as it was not ‘age appropriate’ for a teenager – but if it’s a teenager with a progressive condition who loves Disney, who the heck should be deciding what is appropriate other than the people who know her best?

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    1. In terms of toys etc, I swung from one extreme to the other — I did try age appropriate toys for years before finally accepting that it wasn’t going to work — but I keep her Sophie as a treat at home!!!

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  4. I think in life, disabilities or not, and as much as some of us aim to try and help others, everyone can only truly speak for themselves. No two people are the same or face the same challenges. So please don’t listen to anyone who tells you that you are this or that; you are an amazing mum to your children, and you are doing the very best you can for them. Someone said a similar thing to me about how I spoke to my 2 year old as if she was a baby still; her understanding at that point appeared to be at the level of a baby so there was no reaction if you spoke to her any other way. I agree with you, pace and timing are key – and only a parent who spends so much time with their child would understand that xx #sendbloggers

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    1. Everything disability has changed hugely since my daughter was 2, so hopefully it will change a lot more – and for the better – by the time your little girl is 20, like my daughter xxxx

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  5. People in offices make decisions, change rules, amend criteria and make sweeping changes perhaps doing what they feel is the right thing to do to help but why is it they never realise that one size doesn’t fit all. Everyone has their own challenges, ways of keeping things ticking over which suits them. From what I have read on your blog; you are truly amazing and you know what to do and when to do it. No-one knows better than you what your daughter wants or needs xx

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