Advocacy, Uncategorized

The perks and pitfalls of AI when navigating disability

How a wonderful English teacher taught me 35 years ago to work with AI today…

I will always remember the quiet, disarmingly unapologetic honesty of my English teacher, Mr. Melnick. Blessed with ending my education in an international school, this wonderfully eccentric yet archetypical professor of English taught with a quiet passion that inspired generations and kept classes endlessly riveted.

While his English teaching was excellent and challenging, I remember most vividly an introductory lesson in which he laid out his expectations of our presentation. We were to purchase an A4, 4 ring binder – one that laid flat on opening (these are not easy to find, but SUCH a joy to work with). On each sheet of lined paper (and absolutely not narrow-lined!), we were to draw a 2.5cm margin on the right side of the page, to allow him to add markings. We were to write legibly, on every other line, again to allow for marking and better legibility.

I’m sure you can imagine the rows of raised eyebrows and barely perceptible sighs… whereupon Mr. Melnick calmly explained that when he reached the bottom of his marking pile, you had better be sure that your handwriting was clear and that you had followed all his instructions.

“I am merely human”, he explained, “I will never deliberately mark you down for poor handwriting. But if I am tired and it is difficult to read your writing, I will certainly, involuntarily fail to recognise the brilliance of your thought”. (I paraphrase a little and may embellish, but my goodness was his delivery joyous!)

The importance of presentation and its profound impact on the reader’s state of mind and body has stuck with me ever since, and it influences my work on a daily basis.

Knowing that decision-makers are faced with hundreds of “bundles” of evidence, all using the same forms with the same colour schemes, often about children with superficially very similar needs leaves me with an overriding question: how can I make sure that the child I am presenting to you jumps off the page and immediately comes alive in your mind? Knowing how busy those working in public services are, how can I present the facts of a case quickly, clearly and collaboratively? After all, adversarial language always triggers defensiveness which is rarely conducive to swift progress?

At every turn, Mr. Melnick’s lesson teaches me anew and I think of him with enormous fondness and gratitude.

I hope you will forgive this preamble that flies so glaringly in the face of our demand for bite-sized information, for 10 second reel gratification and for instant gratification… for I have not even raised the main topic of this essay and we are already several paragraphs in (and my mind immediately returns to another of Mr. Melnick’s lessons teaching us how to plan an essay and the joy/horror of noun phrases! – I fear he might find my writing here a little chaotic and meandering!

Sandman – thinking assisted by silicon

In the last few months, we have all entered a new world of access to information and knowledge combined with a virtual and artificial personal assistant/best friend who knows everything and is able to advocate on our behalf with the confidence and assurance that we could only ever dream of. Gemini, ChatGPT, Claude and their cohorts of acolytes take our clumsy questions and profound anxieties, and quietly assure us that we are in the right. They take our hands and find references to legislation, service directors and all manner of other learned information. At every turn they empathise with our pain, confusion and anger, validating our feelings and offering to write that “strongly worded letter” that will magically ensure results that have long eluded us.

And then Gemini, ChatGPT or Claude write a letter/email. This missive is inevitably structured in a way that makes us feel rather inadequate by comparison. Salient phrases are highlighted in bold font, subheadings are often very formal sounding noun phrases and bullet-pointed lists authoritatively make your case so well that you sit back, triumphant in the conviction that the professionals will finally hear you and act accordingly.

The Confidence Trick

Unfortunately, all that glimmers is not gold, and things that seem too good to be true all to often are. An unfortunate pitfall of AI is that (as wonderful Dr Jo Black summarised on LinkedIn) AI is so good and so confident in drafting such missives that:

I’ve lost the confidence to just write a good solid response in my own voice and leave it at that.

Our soft human confidence will never be a match for the hard, unflinching assurance of ones and zeros that find order in our internet ramblings, never concerning themselves with the minor irritation of fact or fiction.

information at the touch of a button combined with an author who shares none of your insecurities (either of knowledge or self-esteem).

at every turn, you lose a little more of that self-esteem, confidence and assurance in your own ability.

Hallucinations, lies and sycophancy

For all its confidence and assurance, our knowledgeable and friendly assistant is not all it seems. For reasons that are mysterious at least to me, those ones and zeros corralled by chips of silicon make facts up. They hallucinate. More than this, it turns out they deliberately lie repeatedly.

All this is couched in sycophancy of a curious type. Are we truly to believe that the digital voice that answers us so nicely, so endlessly flattering and deprecatingly considers us superior, while we constantly lay bare our ignorance is genuinely working in our service?

It seems that this technology we call “intelligence” is not yet quite that. It is a powerful tool that is already changing much of how we live our lives. As with any tool, and particularly any new tool, it is imperative that we learn how to use it, and to recognise that tools can be used well or poorly – for good or for bad.

AI has access to much of the information we need when navigating public services. For the first time, information about the law is truly available to anyone.

It remains OUR responsibility to check, recheck and triple check that the information we then claim as fact is indeed correct. Go to the source (eg Children and Families Act 2014), read it and if it does not align with your expectations, go back to your AI chum and ask for clarification until you find what you need.

Keeping and empowering your voice

I’ve been chatting with a number of AI chums for a few months now. Finding the boundaries, enjoying the adulation then finding it laughable in its nonsense, becoming frustrated at the strange limitations I find in my particular exploration of expression and information. Using the conversation feature has led to many loud altercations as I argue with Sand!

In a very realistic way, we have taught Sand to think… (Jack Clark, Anthropic)

But Sand lacks the complexity of emotions we experience every moment. I regularly have to call these models out on their tendency to “adore” and “idolise” my thoughts, or to “empathise” to a degree that simply does not reflect my world view. In the time spent conversing about all sorts of nonsense (the thoughts in my brain resemble the thousands of bees in a honey hive), the chums (and I use several that I then test against each other) slowly learn my tone, my turn of phrase, the “me” of my written expression. Interestingly, none has been completely able to replicate that voice, though they have tried and adjusted their suggested messages IF I ask it to try.

So now, I start writing. I do the work I have always done. I may use an AI chum to find and check a fact, but I prepare the report, letter, email etc. myself. And then I ask it for a sense check. Specifically, I ask it to keep my original wording and highlight any recommended changes in bold text. If it feels I have made a mistake, I ask for this in bold as well. Doing this has allowed me to keep the chum firmly in its place and allows me to hold on to my voice, my identity and my confidence.

It’s my experience that an authentic, individual voice has very real power. When we can reach through paper and digital forms to another human and be seen and heard by them as a real person, we are more easily “heard”. Anything that dilutes your wonderful, unique individuality turns all the facts in the world into the background noise of people in need and services in crisis. And however tragic, any background noise fades and eventually goes unnoticed.

Navigating public services successfully requires a lot of knowledge and experience, and expressing yourself clearly in a manner that will be heard can be made much easier by AI language models.

AI writing has already developed a very distinctive style. Without your personal touch, this may make you become even more invisible than you felt before.

We are more than ones and zeros, black and white

Go forth and compromise! Live in the grey, embrace all the digits of mathematics, the music of your voice, the art of your imagination! Be You with gusto, with all the emotion that your life evokes.

Then… then go and use that AI chum as a tool. As an assistant, but not one with any greater power or influence or ability than you. Tell it off when it rewrites your beautiful, messy, emotional words. Check and double check the facts! Challenge its formatting – you do not need to “bold” the important words of a sentence.

Make sure that you feel comfortable with the words you eventually choose to send – would you speak them aloud to the recipient? If not, edit further!

Remember, too, that the person reading your message is not a “system” a “council” , a “service”. He or she or they is a human, much the same as yourself. Consider how they might feel when they read your message – will they want to work with you, or feel attacked? What are the next steps in each scenario? We live lives that are not resolved with one email. So consideration of consequences and future collaboration is critical.

And remember that transparency, authenticity and even vulnerability can be your most effective tool. And sometimes, that means that we need to use technological tools such as typing, voice notes and AI. Dyslexia, learning difficulty, stress, chronic illness, neurodivergence – there are a myriad of reasons why crafting a message to a local authority in order to advocate for yourself or your child becomes an almost impossible task. And where an AI chum can be life changing.

If that is your situation – tell the person to whom you are writing! Be transparent – ask that AI chum to include a “disclaimer”, a transparent explanation that you are using AI to help you overcome barriers to self-advocacy. The simple act of telling an unexpected truth usually catches the attention of even the most jaded official.

AI (that particular model we are talking about here) is a remarkable thing. I have no idea where it will lead us. There are big ethical questions that we should be asking and pondering, not least given how quickly this technology has been unleashed. And yet, in my world of disability advocacy, it offers the possibility of equity – that rare equalising force that raises up the shortest child by giving them a higher block to stand upon than the tall kid who can look over the fence unaided.

Used unwisely, however, it will keep you behind the fence – unseen, unheard and bewildered that the magical words you crafted with the praise and assurance of that chum failed to fix everything it promised to.

Disclaimer

The articles published on this website reflect my personal understanding and experience of disability law as a person living with a disability and engaging with the legal framework that affects disabled people.

I do not write in the capacity of a lawyer, and nothing on this website should be construed as legal advice, legal opinion, or a substitute for advice from a qualified legal professional.

The information provided is intended solely for educational, informational, and public discussion purposes. While I strive to ensure accuracy, laws and regulations evolve and their application depends on the specific facts of each situation. Readers should seek independent legal advice before acting or refraining from acting on the basis of any information contained in these articles.

No lawyer-client relationship is created by the publication of these articles or by any communication arising from them.

Uncategorized

Coproduction on the frontline of SEND

Contradiction and compromise abound in the world of special educational need and disability. We have good legislation yet far too little resource to implement it. And it is crucial that our community keep working with elected officials to ensure they realise the importance of those legal rights, but it’s equally important to find a way to make today’s system work for families. They can’t wait for next year, or the next bill…

Caring, parenting

Parent? Carer? Who’s having an identity crisis?

A carer is anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid. 
NHS England

That sounds easy, doesn’t it? If your partner or parent becomes ill and you need to help them, you are a carer. Even in those circumstances, it takes an average of 2 years for someone to realise and accept their new role.
Now imagine that the person requiring care is your child… maybe a baby? How do you disentangle caring responsibilities from parenting responsibilities? After all, no baby can cope without support!

Very few parents of disabled children view themselves primarily as carers. They are simply parents. The fact that parenting in these circumstances bears little resemblance to the experience of others feels irrelevant. We love our children and we will look after them according to their needs.
So why is it sometimes important to differentiate between “parent” and “carer”?
And how can you do it?

Disability in children presents in an infinite variety of ways. This blog is by necessity very general, so you may not recognise your circumstances in what I write. In the blog, I’m trying to be as broad as I can, which can mean that I’m referring to less complex cases. Each family will have a set of unique issues that need considering on their own merits, but hopefully this will give you some points to think about…

The Early Years…

Differentiating parenting from caring is much more straightforward with a very young child than later on. The primary needs of feeding, changing, sleeping are largely universal even if your baby or toddler is struggling more than most. You will be spending your time nurturing, reassuring and showering this little bundle with love, all of which sits quite easily under the “parenting” heading.

If your little one has medical issues, the “caring” responsibilities are quite clear. You may have to learn how to tube feed, how to change dressings, how to clear an airway. All clearly tasks that are considerably different to “parenting”. In this scenario, you will also be surrounded by a medical team. There is no doubt that this kind of parenting is extreme and you will also find yourself advocating for your child as you learn more than you ever anticipated in order to keep them safe. For any of you in this situation, I highly recommend The First Breath by Olivia Gordon, who gives a beautiful account of the intertwining relationship between parenting and caring.

For others, you will find yourself parenting in a way you hadn’t considered, but feels reasonably easy because you are responding to your child’s needs. They may not like being around people, they may shy away from certain sounds, clothes… and you just adjust, because you are parenting.

The world has yet to encroach on the family you are building. Demands are fairly low and you are able to enjoy being a parent… albeit you may have noticed some differences between your family and those around you.

Tests and checks and expectations…

As time goes by, systems begin to encroach. Health visitors, quite rightly, will want to see children reaching certain milestones in the “right” order, at the “right” time. In other circumstances, you will have notices things that don’t feel “right” and you may already be fighting to be heard.

And now you have to develop two identities:
Parent: nurturing, observant, anxious when things aren’t right, seeking answers and help.
Carer: objective, clinical, evidence-based, advocate. Because without these qualities, your voice may well go unheard.

There is huge overlap between these two roles, as well there should be. But many of us soon discover that our role as parent is very quickly dismissed. There may well be much talk of “you know your child best”, but when you sense a serious problem chances are that you will be branded an “over-anxious parent”.

As time goes on, more people enter your life and more checks, tests and expectations appear. Some of these will be truly welcome, especially if you have been begging for acknowledgement and help. Some will blindside you. Some will feel intrusive and unwanted. You may find yourself wishing you could stay in your family bubble, where everyone felt safe and accepted as they are.

You as a Carer

One of the most important roles you will develop as a carer is that of Advocate. You will be your child’s voice, you will be there to ensure everyone knows when their needs change, or are not being met. With that comes the role of Protector. Many of our children need to be protected from the onslaught of professionals, tests, systems so that they can simply be children. Finding the balance between the necessary appointments and those that could be handled differently will be one of your superpowers.

You will become and Administrator. Reams of paper will appear through your doorstep, emails will fly through the ether to your inbox. If I can offer one piece of advice here, it is to find a way to file all these pieces of information in a way that works for you. Evidence is going to be a word that you will simultaneously love and hate, and each letter is a piece of evidence…

In my more organised days, the following system worked very well indeed. I had one for each child. Each month had a separate folder or part of a file, with a sheet of paper at its front. Whenever a letter appeared, I would note the date, professional and summary on that sheet of paper. I then filed each letter chronologically.

You will learn more about your child’s condition than most professionals will know. This makes you an Expert Parent and you will gain strength and confidence from that label if you can truly believe it. Click on the link to find information about training events that can help you.

Maybe the most fundamental attribute that you will develop as a Carer is the ability to Challenge the Systems.

You as a Parent

Parenting is a complicated business, and there are many different “styles” of parenting. But at its heart, parenting is about supporting your child to become an independent adult. It’s a LONG process, that changes depending on your circumstances, your child’s age and needs, the society you live in and even your local community.

Add in disability, and you must also add in a host of observers to your parenting. Healthcare professionals, social workers, school staff, charity workers will all be part of your life and, whether you like it or not, they will also affect your parenting.

All too easily, your “parent” self may well become smaller and smaller.

With a little bit of hindsight now my children are on the cusp of adulthood, I think the one ingredient to look out for it: FUN!

Going out was always really difficult with my three… so we tried (too rarely) to have fun at home. One of my favourite go-tos was the bathtub.
Food colouring when I was out of bath bombs – or we made our own!
Picnics in the bath. Yes. We got favourite messy foods and just ate in the bath. Food fights and generally making a mess was good for everyone.
My children LOVED playing with cornflour and toys like cars. The bath was a wonderful place to make more mess.
Potion making is probably the best. Gather cheap bubble baths, ends of soap bars and old bottles (or better still ask friends who use hotels to collect any small bottles), and make potions!

If you have stopped having fun, it may be time to have a look and see where your parent self is hiding. It may be time to put your carer self in the passenger seat, if only for an hour or so.

Parent carers are never alone…

One of the most challenging things about being a parent and a carer is that you will be faced with many contradictory messages. And you may well find yourself unable to make decisions alone. What is a simple parenting decision for many becomes a minefield of caring and safeguarding questions where the opinion of several official departments will play a part in your decision.

For example, many people will tell you that part of parenting involves teaching your children to do new things – some of which may well be risky!
Parts of the SEND system will be suggesting that you are being too protective and slowing your child’s independence – but other parts of the system may well be concerned that you are putting your child “at risk” and talking about safeguarding issues.

The reality is that parenting and caring for a child with additional needs are always intertwined, and that many of us are caught in a fishbowl that tremendously limits our options. It can be really helpful to stop and remember that. Remember that as a carer, your parenting choices and independence may be limited through no fault of your own. And don’t hesitate to remind those around you of that reality…

And You as… You???

A big topic for another day. When the evening comes and you are reaching the end of the day’s parenting, maybe a lull before a night of caring, ask yourself: did you give any time today for “you”?

In the midst of caring for complex little people (often more than one), we simply lose ourselves. I’d like you to share a moment, a thought, for the unique and wonderful person that is you. She or he may be in hiding at the moment, or hibernating while you concentrate on keeping your children alive. But she or he is still there somewhere, waiting to emerge once again. I wonder who she is, what he likes? I wonder how you are changing in response to this strange world you inhabit as a parent carer?