Transcript: A new model of support for independent living

Personal views from Kiana Kalantar-Hormozi, an artist, filmmaker and activist

Podcast Episode: A new model of support for independent living

Category: Innovation and change 


What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

Kiana: My name is Kiana, Kiana Kalantar-Hormozi. I’m an artist, filmmaker and activist, and up until now I’m proud to have had many achievements. I’ve been nominated one of the 30, under-30, most inspirational women in Scotland in 2017 and MDUK Campaigner of the Year in 2018.

After graduating my short protest hip-hop film called ‘Tax On Me’ has been viewed by tens of thousands of people in Scotland, raising a parliamentary motion on the issue of Care Tax. I am also privileged to have Degrees in Film, Psychology, Law … and quite recently I’ve made the mad decision to pursue my fourth Degree in Music Theory next year.

I can do anything I put my mind to, yet despite all those accolades and my iron will, my life has been an uphill battle from the very start. I have Spinal Muscular Atrophy, Type 2, or SMA Type 2. This is a genetic condition which causes my body to lack the vital SMN protein we all need to grow and maintain our muscles. And as a result of my muscle weakness, my life looks different from the average person. I need an electric wheelchair to move around, to get from A-Z – I have limited lung function and I cannot eat a burger without being a high risk of choking. SMA also means that I need 24/7 physical support to go to the toilet, to get up in the morning, get dressed, do exercise to keep myself healthy, or even just to open a pen. And it is this reality … not the fact that I have SMA and my muscles are weak … but this dependency on our care system, on our society, and ultimately on individuals in our society to value my independent living support that has held my life back time and time again, and even at points, put my life on the line unnecessarily.

So today, I want to tell you my thoughts, my two pence, based on my own personal life experiences, on how we can move forward with independent living support, and how to get it right for everyone.

What is it really? How do we define it? And how can we ensure human rights are upheld? Why hasn’t our government managed to get it right, and why are we still relying on unpaid support to the detriment of many disabled people in our society?

I want to try and answer all these questions, from my point of view at least.

But first things first, what on earth is social care? Because that’s the term that society uses – that’s the term that Social Work uses, and in my opinion it’s a really confusing term that doesn’t mean very much and misrepresents the support I actually need.

The word ‘social’ implies that I’m going to a fun outing, and the word ‘care’ implies that I need people to care for me, or about me because of my health condition. Now I do, in fact, have a social life, and go out when my workload allows, but what I need is support to get dressed, to fix my hair, get in a taxi, to see my friends – not to hire someone to socialise with me, or befriend me, or teach me social skills because of my disability. And I don’t really need someone to care for me any more than people care about the average person. I want friends and family who are not paid to care about me, and otherwise I’m quite capable of caring for myself – and I know exactly what I need.

You see the problem is the word ‘care’ implies a certain amount of sentiment and selectivity which is quite patronising to disabled people. What happens if there is someone in our society who needs 24/7 support, but no one likes them or cares about them? What happens then? Are they left without any support? As a disabled person, do I need to be really nice to access the support I need?

But on the other hand, I do need someone to care about doing their job properly, care about making sure they get me ready on time, to know how to do my exercises in the way that I’ve explained so I don’t have to repeat myself and spend my very limited energy on my basic needs. And more ironically, I do need society to care enough about my human rights, to enshrine independent living support and its associated budgets into legislation, to spend money on this so that my right to life, and my right to equal playing fields isn’t based on one personal magically caring. Sentiment is optional – human rights, on the other hand, should not be. Social care and its associated terminology is based on the problematic charity model, rather than a rights based approach. So as we’re doing today, I’m going to use the term ‘independent living support’ when I’m referring to the practical, every day physical support I need to make my life possible.

So now that we have a shared language and terminology, we can turn to the matter of what support I actually need. What does a Personal Assistant actually do?

You see I’m often put in the exhausted position of hiring and interviewing potential candidates for the role, and after years of doing this I’ve realised it’s important to start with the very simple question – what do you think this role involves? I don’t want to tell potential candidates and have them nod and agree with me so they can get the job, because that tells me nothing about what they imagine the job to be. But I’ll tell you … and the short answer is – a Personal Assistant removes barriers in my way. The long answer is a bit more complicated. It is a complex role, like many jobs turned into one. There is a personal care aspect that involves the basics of toileting, showering and helping me get dressed as I choose. There’s a medical and emergency aspect which involves more complex physiotherapy and being able to react quickly if I choke, or if I can’t breathe. There is the everyday life aspect of assisting me to cook and keep my house clean. And finally, there’s the more general assistance of helping me move my arms, pay over the counter or access my bag when I’m outside – all whilst giving me space to live my life like everyone else.

Being able to use a straightener as a Personal Assistant and fix my hair in the way that I ask is just as important as knowing how to do my jaw jack to alleviate my jaw tension … or actually maybe the exercise part is more important, but you know what I mean! It’s about helping me live the life that I choose, as I choose, and stepping in when I need assistance.

And I do need a very specific type of physical type of support, but there are other disabled people who have various support needs and barriers that need to be removed in their life. That could be communication barriers, systematic barriers, the list goes on. And even two people with the same health condition will probably have very different needs and lifestyles. The role of being a Personal Assistant is as varied as the people that exist in our societies. Now it takes many months to train a new PA, it takes years to build up the experience to excel in that role – and by that time, or even after a few months, weeks or days, sometimes, hours … people often decide that they’re not cut out for this job – they made a mistake – that office is, at least, less responsibility, or that the salary just isn’t high enough for them to justify the effort or stay in this role. And then again, I’m put in a position of existential crisis – having to advertise, interview and hire again in a Sisyphean looped nightmare.

Many people with your muscular health conditions who are, I must say, privileged with excellent communication skills and abnormal amounts of patience, have no real option but to train and hire their own staff – not only because pre-packaged support isn’t safe and doesn’t meet their needs, but also in order to strive for a certain quality of life that’s otherwise impossible, social work services, or agency support dictates what time you can get up in the morning, what time you’re allowed to eat or go to the toilet, what needs are deemed as essential or expendable. That type of support is essentially a prison. And the problem is our current social care system is outdated in its views. Disabled people are still seen as infantile, incapable, even an outright burden on the hardworking taxpayers. And so every time a support need is assessed, a budget is allocated, there is a rigid framework that dictates what disabled people should or should not be allowed to do with that support … or to what extent choice and autonomy can be financially afforded to them, or often, not afforded to them.

The real question we have to ask is – what are the barriers in someone’s way, and how do we remove them.

You see, Personal Assistants have always existed in our society and seen as valuable, important workforce, but only when they assist the rich and powerful. It’s funny when I look at TV shows like Downton Abbey, and my mind starts to ponder on why an upper class person has a whole team of staff? Why do they have someone assisting them to get dressed, do their hair, pick up their jewellery, when they could do it perfectly well themselves? I will never understand, but I certainly know that if medical technology advances enough to regenerate all my motor neurons, if I had enough SMN protein in my body, I would happily sweep my own floors and get all the corners I see that are usually missed – and that would be so satisfying. But until then, I need to hurry up and get rich, or change the system, or do both at the same time.

You see, we could talk about values all day, but really it does come down to money, and we need to put our money where our values are. You see budgets drive the narratives, we’re led to believe … in particular, that of unpaid support – because the harsh, cruel reality is that in the 21st century, most disabled people, like me, who need 24/7 support would either be dead or locked up in care homes without the unpaid support given by families, friends, partners. Some disabled people already are.

To my surprise and shock, the Feeley Report failed to really tackle the most important issue with our current way of approaching independent living – the issue of unpaid care. And yes, unpaid care is an issue, for two reasons. First because we are often spun this narrative that caring for a loved one, family member or spouse is a heroic choice, that disabled people are grateful for the dedication given to them to help them live their lives, or more bluntly, just to keep them alive. But the truth is this – there is no choice involved in unpaid care, and that is the issue. And yes, unpaid carers are doing immensely valuable work, but they’re given no option by our government. Both disabled people and unpaid carers are forced into this situation by default.

When I wanted to move out, go to university, live an independent life, I was told that one reason the council wouldn’t pay for 24/7 support was because I still had my family. Imagine being young, 17, ready to experience what is supposed to be an exciting introduction to the best part of my life – Fresher’s Week – and then not being able to go because of lack of support. Or did the council really imagine I would go to Fresher’s Week events with support from my family. I mean can anyone here imagine going to a Fresher’s Week event with your Dad? Somehow I don’t think that’s a great idea! I don’t want my family to do unpaid care for me. I don’t want my Dad to come home from work, exhausted, after a long day of being at his work, and then I have to proceed with him to do my jaw jack because my jaw hurts, or to do my breathing exercises because I feel short of breath. I have to make concessions on what I can and can’t do for my health and for my Dad’s health. And it isn’t that he doesn’t want to help, it’s that he’s exhausted doing a 50 hour per week job, and in turn it’s my health that is affected.

But more importantly, I don’t want my Dad with me every second of my life, knowing what I am doing, because he’s my Dad – I want to see him on the weekend, give him an update on my life, and have the same father/daughter relationship everyone else in society takes for granted. I want autonomy and freedom. But still, I know how privileged I am to have a father who is trying his best to support me, like so many other unpaid carers out there.

But a reality that we don’t talk about, and that we haven’t investigated … for so many disabled people, unpaid support is a prison, and you know, all I’ve heard from the Free Brittany movement that happened in America, and her struggle to break free of the conservatorship. But what we don’t hear in the news, what we don’t see is the thousands, perhaps millions of less well off disabled people stuck in abusive situations with their families, or even in sexually abusive relationships with their partners – unable to get out because they are dependent on those same people for their basic needs. And this is happening all around the world, and I see messages every week of disabled people at breaking point and unable to get out. How can this be a humane, just system for any of us?

There is so much that needs to change, but to sum up everything I’ve said, I want to emphasise one very important thing. Please remember, getting independent living support right for the people in our society is not difficult – no, it’s not … but it is expensive. It will cost. And this cost is an investment into our human rights, into our values – values that state that barriers should be removed so that people can live full, happy lives to their best potential. It is an investment that will give back to our society … not just in the philosophical sense, but we will create jobs that are properly paid, and that in turn enables disabled people to go out into the workplace, where society can benefit from their unique skillset. And that, in turn, enables unpaid carers to also pursue work. Everyone wins – we might need to spend a little, but we get back a lot more. It is time to stop thinking that disability is a box that you are either born into or not, because most disabled people acquire their health condition in their lifetime. So to our policymakers, politicians, and people deciding how much my life is worth – don’t think that independent living support is something you’ll never need to access, because independent living support is an investment in ourselves.

Thank you very much.

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