There She Goes: the one with the lockdown

I’ve just binge watched There She Goes, described on iPlayer as a “Comedy drama that shines a light on the day-to-day life of a family looking after their severely learning disabled girl, Rosie.” 

I love and hate There She Goes.  I am drawn in by the very watchable David Tennant (Simon) and Jessica Hynes (Emily).  And I love it because there are moments when it is funny in a world where people (wrongly) seem to think that parenting a disabled child is a pretty joyless affair. But I’m frustrated by a programme that feels too loosely connected to many of the political struggles disabled people and families face.  And watching Series 2 under lockdown has made me even more aware of the need to foreground these injustices. 

So, here are my ideas for the next episode: There She Goes  – the one with the lockdown.  

It’s 2020 and mum, Emily, dad, Simon, brother, Ben and Rosie[1] are now in lock down.  All Rosie’s routines are disrupted, she can no longer go to the zoo, avoid the animals and roll down the hill.  Even socially distanced walks become a nightmare as Rosie fails to observe social distancing rules and she simply won’t wear a mask – much to the disgust of passing strangers and the next door neighbour whose daughter is never seen without hers.  The family don’t receive a shielding letter and the support that comes with it, but decide they must shield because of the risks to Rosie of being admitted to hospital with no family support and of being subject to a Do Not Resuscitate order in hospital.  They struggle to book their delivery slot at the supermarket and can’t make use of the quiet hour as this is for older people.  Despite being on the ‘vulnerable’ list of children who can attend school, Rosie is not going in because school have implied that it would be difficult to keep her safe.

Simon has been furloughed but Emily is still able to work remotely, and while Simon drinks and smokes in the garden, Emily’s on-line meetings are regularly punctuated by Rosie with her iPad, demanding Emily find another picture of an X. Colleagues think this is cute the first few times, but then begin to private message each other about whether Emily is now coming across as ‘just a bit unprofessional’.  After all, restructuring is on the cards. 

The grandparents are all in self-isolation too and Rosie refuses to Skype. She has not seen her beloved Gandalf (grandpa) for weeks – Gandalf, who always looks deeply uncomfortable when Rosie is around, is relieved. Grandma talks constantly about how desperate she is to see her ‘perfect’ new baby granddaughter … and Ben. In the last four months, the cheery social worker, who visited to ask about the bruising on Rosie’s shoulder, has not even picked up the phone once to see how the family is doing.  The local authority Rosie’s family live in is one of eight which enacted the Care Act easements which means that Rosie’s small care support package is under threat and her Education Health and Care Plan no longer has the legal teeth it used to have.  

But as the strain begins to grow, Emily signs up to Twitter.  She discovers a community of disability activists – disabled people and family members.  She starts to learn about a social model of disability and realises that her deep love for Rosie is built on the view that it is society, not Rosie who needs to change.  She starts to follow the #SEND community and she learns that it was discrimination that led to her daughter being asked to leave nursery, not kindness upon the part of the head tilting, weakly smiling nursery manager.  She learns that the social worker should have offered Rosie a children in need assessment when she came to visit, not just a few days generic respite, including archery, but support designed to meet Rosie’s hopes and dreams.  And Emily learns that she is entitled to carer’s assessment.  

On learning about the Care Act easements in her local authority, Emily gets legal support to challenge them and the easements are withdrawn.  She joins with other disabled people and families to campaign for guidelines for critical care resource allocation so that Rosie is not at risk from a DNR.  And then, she joins the #EveryDeathCounts campaign to force the government to publish robust statistics about the deaths of people with learning disabilities in the pandemic.  

Emily is exhausted. 

Simon has another smoke in the garden.


[1] Rosie is played by a non-disabled child actor.   We are told that ‘advice from psychologists was that the long working hours with minimal breaks would be too burdensome for a learning disabled child Robinson, Abby (16 October 2018). “New David Tennant comedy There She Goes is funnier than it has any right to be”Digital Spy. We are not told if advice was sought from disabled actors. 

#SENDNationalCrisis

I  was delighted to be invited to speak at a rally in Leeds as part of #SENDNationalCrisis on 30th May, 2019.  Here I explain why I wanted to speak at the rally and my rally speech is published below.

Way back in 2003, I began my PhD focusing on the experiences of parents who register an appeal with the Special Educational Needs and Disability Tribunal to fight for the children’s educational rights.  I was driven to study by my own family’s experience of the inequality in the education system.  During my study, families told me about the exclusion and isolation their children faced, the inadequate and inappropriate support provided and, in some cases, the out right disability discrimination their children were met with in schools.  Then, as now, parents were campaigning, but the rise of social media means that now local groups are connected with one another in ways that would not have been possible back in 2003.

Those connections have led to 28 marches across the country organized by parents campaigning for better support for children with “SEND” in schools on 30thMay, 2019.  This parent-led campaign attracted national media coverage, something parents, like me, could never have dreamed of in the past.

Working with disabled children and young people, and adults in research over the last decade or so (http://doeseverychildmatterpostblair.wordpress.comhttp://bigsocietydis.wordpress.comhttp://livinglifetothefullest.org), the educational disadvantage and discrimination disabled children and young people face has been a constant theme.

So, I was delighted to be invited to speak at the #SENDNationalCrisis rally in Leeds.

This is what I said …

We’re here because the education system is broken.  

And this broken system is breaking out children. 

Too often the system sees our children as difficult to teach and as costing too much. 

Our children are not the problem. The system is the problem

The system has been underfunded and undervalued for years.  And the results for our children have been catastrophic.

Our children are sent into isolation booths in schools.

Our children are 6 times more likely to be excluded than other children

Our children are more likely to be bullied and abused in schools 

When they grow up our children are less likely to have a job, and our children are less likely to have their own front door.

As adults they will face health and social inequalities that put them at risk of early death.

Education is where this isolation, exclusion and discrimination begins.

When my son was little, I thought that the government didn’t know what life was like for disabled children and their families.  

I thought that things would not be that bad if people knew. I thought that all I had to do was tell people and that things would change.  

I was wrong, they already knew, and they still do know.

Despite spending millions on ‘reform’, the government has failed to mend this broken system.  

They have simply messed around at the edges.  

An EHCP is no more than a statement that might, just might, last a bit longer. 

Social care and health are still not part of plans.

Local Authorities are still both the assessor and provider of support – it is still in their interests to limit resources.   

The system is still complicated and adversarial and more and more families are going to Tribunal.  Families are winning ay Tribunal because Local Authorities continue to ignore the code of practice, hoping they won’t be found out.

We need to set the agenda for change. 

So here’s a start.  Our message is this

Our children have a right to an education, and this is a human right.  When you talk about our children’s special needs, you should be talking about their rights, and rights are not optional.  

Stop asking what is wrong with our children and ask instead what support they need to live well.

Assessment must be done fairly and independently

Monitor Tribunal decisions and take enforcement action against local authorities that ignore rulings.

Hold to account Local Authorities who have high levels of families going to appeal. 

To local authorities, I say:

If you cannot give meet your legal duty to every child in education in your local authority, then you must go back to central government and challenge them.  You must use the law.  You too must fight back. 

Finally, to local and central government, I say, listen.  

Listen to children, listen to their families and to disabled people, they have been telling you how to reform this broken system so that no child is excluded and no family has to fight or live in fear.

We may struggle to be heard, we may be tired but we will support each other and we will not be ignored, we will not go away….

Made Possible

Made Possible

On the eve of my son’s 23rdbirthday, I posted a picture of him standing with the Sydney Harbour Bridge behind him.  Nothing unusual about that, you may say, young people travel these days, made possible[1]by cheap flights and hostels.

What makes this picture remarkable is that my son, according to those who judge these things, has a learning disability. Many of his peers are locked up in an institution, his life expectancy is 20-30 less than non-disabled people of the same age[2], because of discrimination and inequality. He is, at 23 already, potentially, middle-aged.

So as I lay in bed this morning, I began to wonder how was this picture made possible?  What do people with learning disabilities need to live the lives they want to lead?

Family: we love him; we ‘get him’ (not ‘totally’ Caroline Dineage[3], how could we ever ‘get’ anyone else’s experience ‘totally’?).

Friends (and colleagues): we have friends who support us, challenge us and together we made possible this world for our son, outside of the woefully low aspirations for people with learning disabilities that haunt their lives.

NHS: thanks to the NHS who removed a chunk of our son’s brain, he no longer has tens of seizures, nor sleeps half the day.  Without the NHS that trip (that flight!) would not have been made possible.

Social Care: this is a tricky one.  Three intrusive assessments before any support was given; 9 month wait once direct payments were approved; being made to feel like the problem in social care assessments for pointing out the problem with social care assessments[4] (I still have no clarity about how parental ‘warmth’ is assessed); support being slowly and slyly eroded against a discourse of cuts that construct reasonable requests as unreasonable.  But a week he enjoys, being outside in the sun, the wind and the rain is, for now, made possible by social care.

Education: another tricky one.  A mixed bag of: acceptance and rejection; tolerance and correction; kindness and cruelty. A turbulent (litigious) pathway through mainstream education culminating in woeful ‘specialist’ FE provision and finally exclusion which led to a happier life outside of formal education where learning through doing the things you love has finally been made possible.

What keeps me awake at night, and writing blogs in the morning, is that what is made possible is also so easily made impossible.  This life of possibility is fragile, as we know from the lives of so many other young people, the slightest change threatens to bring the house down.  As we, his parents, age and if the care to which our son is entitled is slowly undermined, what is currently made possible will be made impossible.  We live in a society, a culture and by successive governments who, at best, lack aspirations for, and at worst, dehumanize, people with learning disabilities [5].

But as I look at that picture, a wide grin and a wide brim mean that hope, too,  is made possible.

IMG_9953 (1)

[1]The repetition of made possible is inspired by Saba Salman’s book “Made Possible

[2]Learning from Deaths Mortality Review

[3]On 19thDecember, 2018 on BBC Breakfast, Caroline Dineage repeated that she ‘totally got it’ when talking about the lives of people with learning disabilities.

[4]With thanks to Sara Ahmed for this point.

[5} See http://rightfullives.net for details.

On #WorldMentalHealthDay

On #WorldMentalHealthDay take a moment to think about what it means to mother (or a person who takes on the mothering role) of a child or adult with a learning disabilities.

We live in a context where we know that our children are likely to die 20-30 years before their peers.  25 is middle age.

Mothers of disabled children are routinely characterised as in denial or over anxious.  We are constructed as difficult, or, even, toxic.

We are held responsible for our own mental health – told not to be afraid to talk about just how difficult it is to parent a disabled child.

But it is not our children who cause us distress.  We love them.  It is the systems we are forced to engage with, and the discrimination that we and our children face, that drive us ‘mad’.