This weekend saw me dive into files I’ve not looked at for years.  Photos, articles, letters of support all focused on the Art of the Possible, even one from my old music teacher at school, then the deputy head with whom my relationship was complicated by the fact that she was also a personal friend of my parents.  She was writing in 1983 just after Anthony’s birth at the time when we allowed our lives to be totally dictated by our relationship with patterning, British Institute of Brain Injured Children (BIBIC), some 60 volunteers, and ‘frequency, intensity and duration’.  Back then Joyce described us as inspirational and had already taken the initiative herself to share with Women’s Hour and Pebble Mill  (we’ve still yet to pique their interest!), hoping that other parents might take heart and encouragement from the incredible positive outcomes we were fortunate to witness almost every day.  

I tripped across my own reflections too and my deep gratitude to every person who saw fit to invest in Jen and my family, and this

Jen had suspended inverted rotation (SIR) and cross patterning therapy with volunteers from our local community multiple times a day

strange, unknown, little understood methodology where we swung Jen around, dangled her upside down, crawled with her, laughed and sang as 3 of us cross patterned time and again, stimulated her body all over and her trigeminal nerve in particular with the strangest of things from velvet to sandpaper to feathers, and where we masked, regularly and extremely carefully.   Masking was simultaneously worrying as it could certainly be life threatening, but I believe has been evidenced as effective on many counts when you look at photos from over the years. 

But I’ve also found the flip side of our life.  The framework which we’ve had foisted on us because Jen has a learning disability, with act after act trying to improve the status quo which we cannot deny began with a very low bar.  Had Jen reached school age before 1971 she wouldn’t have even been entitled to an education.   The act which helped us enormously was the 1981 Education Act.  It came into practice in 1983 giving us, Jen’s parents, the right to be involved in making decisions in her education.  Jen conveniently turned 3 in 1984 so it stood us in good stead on many an occasion over the following 15 years.   

We made it our business to know this act well.  But as for so many other acts full of good aspirations but no funds and no teeth, I have them and know of them, but I’m not sure how much they’ve helped, and I fear some have merely served to heap further injury, indignity and injustice on this disregarded marginalized sector of our population.  Created for the right reasons perhaps but not given sufficient thought as to how it would play out in practice.   

It hasn’t all been a bed of roses 

I’ve unearthed the evidence of the good times, but also the bad times when we’ve been taken to task by authorities incapable of seeing the wood for the trees, hidebound by boxes they believe they need to tick, protocol they need to follow, verbal contributions they are trained to take literally rather than stepping back, taking a deep breath, asking themselves what they’re really looking at, and working with families to make the world a happier more equitable, more welcoming place for all.  A glass half full approach would be so incredibly welcome instead of always assuming the worst. 

The eye watering level of resources that are tied up in making a confusing situation worse for all parties involved is a nonsense.  We’ve endured the horror and the trauma of the runaway train with no brakes.  It’s a hideously frightening place to be.  Your very integrity is called into question and you are hurt to your core through no fault of your own.  It’s tough.  And not everybody has the will, the tenacity, or the ability to counter the system.   

Likewise an ‘emergency’ meeting was called.  Why?  There was no ‘emergency’ because we’ve always played backstop for Jen.  It’s always been known that should a situation break down that we would be there.  It did.  And we were.  So why the emergency requiring some 8 people to clear their diaries the following day in order to discuss the ‘situation’ and come to a conclusion.  Mountains out of molehills.  Nonsensical.  And such an incredible waste of time and money whilst creating immense emotional stress and turmoil for all.   

Even more ironic, I venture to suggest that the authorities only success was to compound the situation.  And worst of all, they’ve done their job.  They go home at night, presumably eat a meal with their family, put their children to bed and watch TV.  Conveniently a pay check arrives at the end of the month to further this life style of calling people to account whose only crime in life is to either have, or support the seriously complex scenario of living with learning disability properly understood by only a tiny minority of the population which in all likelihood doesn’t include the people who have been invested with incredible power to wreak havoc in our lives. 

These experiences of life are the ones that make families stronger, or tear them asunder.  Is it any wonder that more couples with children with disabilities end up separating than those without?  The system has the capacity to set families against each other, to ride roughshod through personal lives and invade your privacy.  And all of this on your shoulders, on top of learning disability.   

For our family we wanted structure and through our journey we discovered what worked for us. We know it’s not what every family would choose, but it worked for Jen and gave Malcolm and me the support we needed to help Jen develop in the best way we’d found at the time.

What are your experiences or memories of living with someone with learning or intellectual disabilities?