SPASTIC – PART 2

A body in the world

In Part 1 of this blog, I wrote about spasticity.  

I wrote that spasticity is a neuromuscular condition that impacts every movement my daughter contemplates in her little 2.5 year old life.  

It’s a condition that makes her very cross sometimes because her body won’t let her do what she wants. Though being cross is mainly a good thing because it spurs her on and makes her ever-more determined to find a way around it.  And she often does find an alternative way.  She’s a clever little thing.  Her little brain is working 24/7 to figure this world out, let me tell you that.  

And that is her body.  That is her reality.  

She is not “less than”.

But how to make someone understand that who is completely oblivious, unthinking, heedless.

Speaking up, breaking down stereotypes

In Spastic – Part 1, I relayed a recent incident, in which someone used the word “spastics” in a derogatory way to describe a group of people to me as unintelligent, clumsy, inept.  

I am ashamed to say that in the moment I was so stunned all I could do was to stare out of the window.  I didn’t say anything.  I didn’t agree or disagree.  I just said “mmm” and then left as soon as I could.  

I didn’t say what I should have said, which was – I know you probably don’t realise it, but that term is very offensive.  As Emily Ladau puts it so well in her book Demystifying Disability: “Disability is not an insult”[1].  And, it’s not just because I have a child with CP, it’s because when you use disability in this way you allow stereotypes that are unacceptable and hurtful to perpetuate.  

I should have said all these things and next time I will.  

I will say them not only because I am defending my daughter, but because I have lost patience with a world that sees her life as somehow different, or less worthy.  

Closer to the average than you might think

In a world that has come so far, in a world that demands equality across gender and race, it beggars belief that disability still has a way to go.  Luckily, there is a lot of momentum behind various movements promoting disability rights, and the world will inevitably have to change.  

I am not an expert, though I am a keen student of the history of disability advocacy, and deeply interested in the concept of what it means to be a body (any type of body) in the world we have built around us.  

Also, like other parents of disabled children, I have come to see the world through a different lens. A lens that reveals how thoughtlessly we have constructed the environment we live in.  

It has been designed and built for the “average” person, who for the most part has in the past been conceived to be (usually) white, (usually) straight, (usually) a man, (usually) about mid-30s and (definitely) able bodied.  But when 31% of the American population are white men[2] and 26% of the population have some type of disability[3], this notion of average is clearly ridiculous. 

The world has been designed and built by generations who were informed by the “medical model” of disability, which says that people are disabled by a medical diagnosis or impairment and that they are limited by these impairments. 

In reality, it is not only these impairments that disable a person.  A person can also be disabled (per the “social model” of disability) by the environment, the system, the society in which they live.  

By stairs with no ramp, by a playground with only a jungle gym, by toys that can only be operated with two hands, by people who park right up against the back of a car that has a wheelchair sign on the boot.  

By people who think of them as “spastics”.    

Accessibility

And so, I am preoccupied by finding “hacks” that can enable my little superhero, that can give her the freedom to operate as she should. 

I have a WhatsApp group with some mums in Hong Kong whose children have physical disabilities and we constantly share tips and ideas.  

I have made Lily a cardboard chair and a special cardboard table for the armchair in the living room.  

I read and follow the work of people who are leading the way in terms of thinking about accessibility[4], designing their own solutions[5] or breaking down stereotypes[6].   

And from now on, I am going to call people out on ableist thinking and old fashioned prejudice. 


[1] Ladau, Emily (2021). Demystifying Disability.  What to Know, What to Say, and How to be an Ally. Ten Speed Press, New York

[2] https://www.washingtonpost.com/news/the-fix/wp/2014/10/08/65-percent-of-all-american-elected-officials-are-white-men/

[3] https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html

[4] See especially Sara Hendren’s “What can a body do? How we meet the built world” and https://teachaccess.org

[5] https://www.frogmobilityllc.com

[6] https://www.theabilitiesinme.com



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