Pride, Shame and Independence

It’s American Independence Day today and it’s strangely appropriate that I’ve had my personal budget review this morning. My personal budget is the amount of money I get from my Local Authority Social Work team to pay for the support I need at home – and it‘s essential to my independence.

I’ve had a personal budget since my tics intensified in 2011. Back then it was clear I needed 24-hour support in order to be safe, but my care package didn’t cover all this time. My Local Authority paid for some of it and Access to Work covered 40 hours, but there were still 50 hours every week for which I had to negotiate, and on many occasions beg, for support from my friends and family. This put a huge strain both on me and on some of the most important relationships in my life.

In 2014 when Dystonia began to affect my hands, my support was increased and for the first time my support needs were fully met. This had a profound impact on my wellbeing and my relationships. For the first time in many years I was able to be as independent at home as I was at work.

I completely understand why it’s important to review care packages but my quality of life is so totally dependent on the decisions of others that it’s difficult not to feel fearful about what changes a review might bring.

One of the big problems is that Local Authorities have a responsibility to ensure that only a person’s basic needs are met: personal care, nutrition, safety. But an independent life should involve so much more –friendships, choice and aspirations, for example.

Up until 2015 the Independent Living Fund (ILF) filled the gap between basic needs and independent life. Since the abolition of the ILF, whether the needs of disabled people who require a high level of support are met depends solely on the decisions of their Local Authority.

This is the background to my social worker’s visit this morning. She was friendly and understanding and the meeting seemed to go well, but it’ll be a while before I know the outcome.

During the visit she frequently mentioned how big my care package is. She didn’t do this in a threatening way and I know that the level of support I get is substantial.

The rational part of my brain knows that the size of my personal budget simply reflects the support I need if I’m to live safely – without someone with me all the time I would be at very high risk of seriously injuring myself, and I wouldn’t be able to live the full, active and productive life I do.

But each time my social worker mentioned the size of my care package, a part of me experienced an all too familiar flicker of shame for taking up so many resources, and it’s hard not to let the negative narratives of ‘burden’ and ‘dependence’ that dominate discussion of disability impact on how I feel.

On the other hand, the intellectual part of me was enraged that I’d allow this type of thinking to creep in.

When I felt this fear and guilt stir in me I remembered the words of Crip activist Laura Hershey: “You get proud by practicing” and Stella Young wrote:

“The journey towards disability pride is long, and hard, and you have to practice every single day… The self-doubt and the internalised ableism will always creep back in at odd moments… but you’ll get quicker at banishing those thoughts.”

With this advice in mind I was able to reason myself past these negative thoughts pretty quickly, but it’s important to acknowledge such feelings because of their potential to corrode.

My personal budget is my lifeline, but none of the money comes directly to me: it pays the wages of my personal assistants and support workers and goes back into the economy through their taxes and spending.

It really matters how we think about social care. Social workers save and re-build lives every day but they’re rarely hailed as heroes. As a society we must make sure they have the resources they need to do their job well. At a time like this when there’s so much social, political and economic uncertainty, this point is relevant way beyond disability. But at the moment the profession is working under extreme pressure caused by the austerity policies of the current Government.

How we discuss independence and support also matters because it’s anxieties and guilt like those I felt today that prevented me for so long from asking for help in the first place. I now appreciate that being independent doesn’t mean doing everything for myself: for me independence is about having personal choice and accepting support when I need it.

It was hard hearing the essential support I need described simply as a ‘large package’, and to have to justify to someone I’ve only just met the length of time it takes me to get washed and dressed in the morning, or how long I need for dinner in an evening. As an educated person who’s worked professionally within the sector I know I’m at a distinct advantage in situations like this because I know the language to use as well as my rights. But I’m acutely aware that there are many disabled people who don’t have the support they need to live independently, and though it shouldn’t, a lack of knowledge of how the system works, makes a big difference.

I want a society where everyone has the help they need to live a full and independent life and where this is talked about with pride not shame. To me the true value of my care package is so immense that it can’t simply be quantified in monetary terms. It’s the difference between having hope and being trapped in isolation.

If you’re a disabled person whose needs are not being met there’s information about organisations that may be able to help here and here.

2 responses to Pride, Shame and Independence

  1. Heather Cawte says:

    This is what I feel every time I meet a new carer. I look as though I don’t need help, just that I’m overweight. Sometimes I will even do more than I should, just so they see how much the simple things take out if me, which is stupid – making myself ill just to prove I need help??

    And I understand exactly what you mean about knowing the right words. Every time I have to fill in a form, I think, "Yes, but how many people don’t get what they need because they can’t cope with forms like these, or because they have no help with them?" It’s completely unfair.

    Fingers crossed for your package staying the same. I know that fear.

    Heather xx

  2. Laura Crouch says:

    Having to support people to fill in these assessment forms is the most difficult part of my personal and professional life. Putting down the worst scenario of every day can be heart wrenching. Necessary to have a hope in hell of receiving the minimal funds required for ‘living’ and yet they are so impersonal.

    It makes people feel like a burden to society or families feel like they are moaning. Finding a impassioned feisty social worker can be difficult, and even then finding one with balls is even harder.

    Your work is invaluable and I hope that you continue to get the support you need Jess, your voice can have such an impact on peoples views and practises.


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