Andy’s sensory processing differences often cause difficulties for him but sometimes his reaction to sensory experiences produce great excitement and happiness. Here Andy is standing at our back door where he likes to feel the temperature difference on his bare arms and face. The snow that was falling in the light from our kitchen and his warm breath condensing in the cold air seemed to be adding to the moment for Andy causing him to stim, laugh and verbalise.
When Dylan sang about the murder of Hattie Carroll he ridiculed the idea that the ‘ladder of law has no top or no bottom ‘. It’s a powerful and moving song that challenges the inequities in the American justice system in the 1960’s.
Listening to a lawyer talk about present day Scottish legislation affecting children with disabilities at recent training events it struck me how little our modern Acts and legal system has improved. Inequality is sadly still very prevalent despite promising terminology. Furthermore our contemporary Scottish Acts have ‘no bottom ‘ in the sense that they are weak and are largely not enforceable by ordinary families. Dip into the Education (ASL) Act, the Equality Act or the Regulation of Care Act and see how far you get against the ‘ big fish.’ Terminology is often almost impossibly vague and when challenges are mounted local authorities and health boards have the legal resources to bankrupt most individuals who would put up a fight. No wonder they thumb their nose at ‘statutory’ obligations !
Pursuing ‘statutory ‘ entitlement is so often a highly complex, emotionally challenging and draining system for families living with disabilities. It brings ridicule to any notion of social justice and shame to us all.
Today a small victory occurred for a family I work with at IBA. It was not perhaps of huge significance in the grand scale of the inequality faced by people living with disability. It was however the culmination of a 7 month struggle. It was a determined effort to stand up for the rights of a child let down by a system that had shown a cumulative lack of understanding and compassion. That is all it takes to fail a young person and family who bravely face great challenges on a daily basis.
The conduct of those who had influence and power in these matters stands in stark contrast. Self interest and a refusal to stand up and speak up lest they risk their position and privileges characterised their failures.
A safety net that should be a cornerstone of a civilised society has been fought for and won. I’ll sleep a little bit better tonight knowing that.
10 examples of real discrimination experienced by people with disability right here and right now.
1. Despite all our disability legislation most individuals and families could never afford to make legal challenges. Service providers and local authorities know this and often behave accordingly, rendering our laws worthless.
2. Tolerance of diversity is limited and mocking people with disabilities is sadly still common place – from the President of the US to the young woman who was mocking Andy in the Co-op tonight. ( if only she had any idea of the challenges he faces and the courage he shows everyday)
3. Professionals displaying their “we know best attitude “ based on nothing more than arrogance and self importance.
4. A widespread abuse of parking bays for blue badge holders by people who simply don’t care. (I’ve stopped challenging – it’s embarrassing, stressful and often dangerous.)
5. The targeting of essential services , facilities and support by individuals in power and their organisations based on lies masked by jargon and unproven concepts.
6. The frequent practice of government and politicians using disability as a way to score points.
7. The impossible demands made by society on unpaid carers.
8. The reduction in social workers, Welfare right officers and an almost complete lack of independent advocacy.
9. The all too common usage of dehumanising language when referring to people with disabilities.
10. A pervading culture of fear around making a stand against these discriminations based on threats to employment and being ostracised for not behaving like sheep.
The need for listening, honest judgement and displaying real courage has never been greater for the wellbeing of those affected by disabilities.
I am writing today as I used to do , on Thursdays as I travel to work on the boat. I have simply not had the energy or inclination for blogging recently.
Andy’s recent difficulties and the festive holidays had been problematic, often beyond words and we have been in something of a survival mode.
Happily Andy’s demeanour has improved and we are cautiously returning to some sort of normality.
Jen and I are trying to put some contingency plans in place for any future difficulties and have reluctantly engaged with our local CAMHS. After what has seemed like an eternity we are technically in the system. Nothing has actually happened though such is the dire crisis in paediatric psychiatric care. We have to try however.
At Inspired by Autism I have been arranging for some of our parents to attend training events on the legislative process around our education system principally because there is so much misinformation around. I also need to share the burden a little in terms of making challenges. We hope it will be productive. My big concern is that regardless of laws local authorities tend to know that parents and families can not afford to mount legal challenges.
Over the festive period we received some donations at the charity and I would like to say thank you for those.
A friend of our good friend, Jamie at Coast Coffee, donated a laptop that was surplus to their requirements and we are delighted to have it as a backup when providing training.
Finally can I wish one of our directors a continued speedy recovery from his illness and prolonged stay in hospital?
Get well soon Michael!
2017 has been a hard year for Andy as he has appeared to struggle with emotions, puberty and hormonal changes. Thankfully the last week has saw a marked improvement in his general demeanour however, and we are hopeful of a calm festive period and a continued improvement for him.
This time of year must be very overwhelming for many autistic people and Andy appears confused and at times almost trapped in the events around him.
“Christmas decorations and lights all around
Parcels, tinsel, sweets ,cards abound”
Andy often seeks refuge in his bedroom from the excitement that is going on and it is important that he has this space to restore his calmness and to escape any unwanted stimulation.
“My brother and sister cry with glee,
While it’s all a bit of puzzle for me”
Tomorrow it is unlikely that Andy will get out of bed early to open his presents but of course that is fine. We will attempt to contain the noise and joy of his siblings downstairs and let him stay in his current sleep routine.
“Excitement and fun the main sound
But normal routine cannot be found”
We will, as always try to accommodate and meet the needs and wishes of all our children over the festive period. A respect for neuro-diversity and tolerance of individuals need for flexibility must surely reflect an appropriate Christmas message?
“ So please have a thought also for me,
And if I don’t join in, just let me be”
May your Christmas be full of love, peace, tolerance and respect .
Merry Christmas X
Andy continues to struggle at the moment. Agitated, pacing, withdrawn from interactions and activities. It’s heartbreaking to watch and incredibly tiring to keep supporting him. I would do anything, give everything to take away his troubles.
Accessing medical or psychiatric support is very, very difficult indeed nowadays, we are finding out. Put simply, already over stretched services are geared towards neuro -typical patients. Barriers are more than sensory, social or fear of the unknown however, as much as these are highly significant. No, the barriers are more structural and embedded in services where knowledge and understanding of autism is at best very patchy. Where understanding is limited medical staff are defensive and often dismissive. Finding pockets of autism friendly support is a lottery with poor odds.
Medical environments must be among the most challenging for autistic people and the process driven procedures leave little room for any flexibility in approach.
The Scottish Autism Strategy had among its initial 2 year goals the following statement.
“Access to services which understand and are able to meet the needs of people specifically related to their autism.”
This should have been in place around 2013/14 although how you would test this is anyone’s guess. These initial goals were of course conveniently ditched in favour of even broader outcomes, but surely no one could claim that this situation is even improving?
Medical care is a basic right under Article 24 of the UN Convention on the Rights of the Child. It categorically states “Every child has the right to the best possible health. Governments must provide good quality health care, “
If only this were true for autistic children. We live in hope.
I’ve been running Inspired by Autism for almost 5 years now. I enjoy the challenge and the modest success achieved. I love talking to people and audiences about autism and I love the peer support that has developed among a wonderful group of people living with autism in Cowal. I do it simply because I believe in small ways I can improve life now and in future for my precious boy and others like him. It’s preferable to the feeling of helplessness and failure that all parents of disabled children experience much of the time.
Lots of my time and effort is spent in another darker place though. That place is a hinterland that exists between the artificial world of government and regional policy, adorned with wonderful titles, half truths and plain lies, and the daily lives of people and families who live with challenges that the privileged could not imagine. These challenges often occur in the pursuit of very basic human rights. The stench of hypocrisy lingers in the hinterland, as opportunistic individuals seek to further their reputation and that of their masters. Devious but weak legislation and policy give a veneer of respectability that covers the real agenda of remaining in power and enjoyment of privileges. It’s a dangerous place to make a challenge as reputations are staunchly and robustly protected by the power that governments, politicians and local authorities are able to wield. The unleashing of such power ruins lives and crushes those who are not prepared to tow the party line or to go along with the pretence that all is rosy in the garden. It’s frequently a lonely and arduous place to be. It is a place that regularly drains you of hope and belief in your fellow man and in the creation of a society in which we actually care about each other. It is a place where you cannot win and where you measure success in terms of damage limitation and incremental improvements for people.
This hinterland is not a place that is good for your health and wellbeing. I choose to come and go from it as I see necessary but for so many these days there is no revolving door.
This post is a little different. Tonight I am asking for support for a petition calling for our government here in Scotland to do more for autistic people and families. It’s not an easy post to make in the sense that I have contacts – some of whom I might even class as friends or people I respect that work with or for the Scottish Government. Similarly I have many friends who are political supporters of the current Scottish Government. While I respect other views on the Scottish Autism Strategy, I certainly don’t agree with them all.
If you work with the strategy I don’t expect you to agree but I would ask you to reflect on the difference between your position and that of people who rely on autism support services. The goals set out are loose and vague and fail to be demonstrable beyond isolated examples of small , sporadic improvements in resources that are proving to be unsustainable (One stop shops) and underused (much of the menu of interventions). There has been no major change as to how we deliver services to those living with autism or improvements in the numbers receiving adequate or any support. The post code lottery still exists across our authorities and in many cases the situation is worse , not better than when the strategy was launched in 2011. E.G. reduction and scrapping of specialist disability social workers, the emphasis of assessments being transferred to already overwhelmed education professionals, the reduction in respite services. I am unaware of specific improvements for any particular age groups and the absolute failure to provide services for young adults/ adults on the autistic spectrum remains as it was. Of course a strategy approach is (conveniently) much less likely to have influence than a legislative change and in that respect many feel they were short changed. The strategy has been heavily involved in guidance for professionals employed in autism services but sadly light in meaningful, measurable and practical improvements in support services and resources.
I believe that the needs of autistic people are far too important to simply say nothing. I have serious doubts that the current request for feedback from ‘stakeholders ‘ from the Scottish Government is a process capable of objectivity and proper critical analysis. I believe that 7 years into a 10 year failing plan we are at the last stage possible of salvaging anything of serious worth in making real impact and improvements for those living with autism.
Please consider reading, signing and sharing my petition.
Duncan F MacGillivray is an autism parent and social worker who felt compelled to set up an autism support charity to help the ever increasing number seeking advice and advocacy. Based in Argyll, ‘Inspired by Autism ‘ is run voluntarily in his ‘spare time’ and aims to offer independent support to the many autistic people and families who have been cast adrift by a failing support system.
In this short piece Duncan expresses his rising disillusionment at the current system and it’s treatment of those who attempt to make a stand.
Sometimes it seems that everyone whose role can significantly impact on those living with disability, require to be rewarded in one way or another before they will act.
After another tough night as an unpaid carer this sentiment feels strong today as I begin to review some of the current cases at ‘Inspired by Autism.’
Personal and financial gain seem to dominate the goals of so many we encounter on the journey of pursuing the wellbeing of people living with autism and disability. I say this with due respect to the many poorly paid and highly motivated professionals who constantly do their best in a crumbling system.
Offers of support can often materialise as symbiotic in nature – you scratch my back , I’ll scratch yours – and that is nearly always a demoralising experience for those in need.
This week it has been an M.P. who wants his picture in the paper in return for a template letter of support to the DWP from his office staff. (Is that not their job?) Push them for a little more to try and tip the balance in favour of those barely surviving in a system with impossible odds and watch them withdraw. Challenge their party’s policy or ask them to stick their neck out and they will disappear quicker than the humanity of a newly appointed cabinet minister.
Policy makers at government and council level often need autistic people and their families to support their ideas and cost saving schemes but I have long grown wary of ‘free lunches,’ for there are none. Here the currency of choice is again career enhancing publicity backed by dodgy stats as they move on up the ladder without a glance backwards at the chaos and misery left in their wake.
The list goes on – G.P.’s wanting to charge those in poverty for endorsing a legitimate claim for benefits, councillors looking to be associated with grassroots initiatives, principally to score points from their rivals, local authorities whose reputation is the only thing that really matters.
At our charity I guarantee that the only goal and motivation is to act in the best interests of those who seek support. I will challenge and advocate for the wishes and legal entitlements of those affected by autism and disability. Our services will always be free of charge and will not be shaped by funding application’s criteria, nepotism, politics or any ulterior motives, regardless of who attempts to thwart or discredit us.
That’s a promise!