The Importance of Voices: Response to Health, Overview and Scrutiny Committee

Disability in the age of austerity is a difficult business.

I became significantly disabled after the birth of my son, five and a half years ago. Suddenly finding myself with frequently dislocating joints and pain and stiffness in my spine that would leave me in bed for days at a time, I was eventually diagnosed with Ehlers Danlos syndrome and ankylosing spondylitis, a form of inflammatory spinal arthritis. The first condition causes frequent joint dislocations and a hefty amount of pain. The second causes my spine and knees to fuse and, again, a hefty amount of pain. Since becoming disabled I have done my best to advocate for disability rights and access wherever possible. I am a member of Access Thanet, sit on the Executive Committee of Disability Labour, and do what I can where I can to raise awareness of issues and improve provision. Of great concern to me over the last few months has been the ongoing saga involving Millbrook Healthcare and the management of wheelchair provision in Kent, that thus far has involved a long (if inherited) waiting list and significant delays in repairs.

I'm generally very good at having a public face. That public face has been present at several Health, Overview and Scrutiny Committee meetings at Kent County Council, as, being a significant user of healthcare provision, what happens in Thanet healthcare wise concerns me greatly. That face slipped on Friday during the last HOSC when I was told that I would not be granted discretion to speak regarding the wheelchair service provision problems we have been having in Kent. I found myself so angry and voiceless and powerless that I became tearful; a reporter was, unknown to me, present in the chamber, and ran a story and a photograph of me in an online publication. As my voice wasn't present in the article, why I was there and what I expected from that day hasn't been spoken about, and I would like to address it.

I struggle with feeling vulnerable. It's a feeling I dislike intensely and avoid if possible. And sitting in the Council Chamber, with my hand up, waiting to hear if discretion would be used in my case and whether I would be able to speak on behalf of my community; that burned. Like many disabled people, I work very, very hard to disguise the level of my disability. And like many other disabled people, I live my life terrified of the double edged sword I choose to forge. I have always achieved quite highly; I have always worked very hard on the things I care about. I have always been incredibly, ridiculously stubborn and entirely unaccepting of any limitation my body has placed on me. But this experience has brought home to me how damaging that need and choice to hide is for those who are choosing it.

Let's be blunt for a moment. If you see me out, I am having a “good day". I likely won't have had a major dislocation (hip, shoulder, knee). I will have taken all the medication and pain relief I am meant to take to relieve the pain associated with Ehlers Danlos and inflammatory spinal arthritis. I will be smiling, I will be hiding the amount of pain I am in regardless of medication, and I will be trying to look like who I was. Who I want to be. Who I think I am supposed to be. I will do whatever is necessary to “look" right so that I don't feel vulnerable.

Because of the level of masking I am capable of, I, and so many others, choose to “pass" well. I limp, mostly due to pain, in a fairly ridiculous manner on occasion. But if I am struggling; if I have had a hip dislocate or subluxate, if I can't keep my kneecaps in the right place, you will not see me. You will likely not see me for days. I will be at home, in bed, unmoving, trying to do the best I can to be useful in that state; writing articles, replying to emails, pretending that even though my life only stretches as far as my mattress that things are “normal”. Because the gut wrenching, humiliating, I'm-thirty-seven-this-shouldn't-be-happening-to-me aspect of disability is one that, until today, I have hidden from. Unless you know me well you will not see me when I am at non functioning levels of pain. You will not see me post operation. You will not see my day to day existence; how hard it is to dress, to clean, to stand. You won't see the five am starts, so that I have enough time to do the physio that enables me to unfreeze my spine so I can stand in time for my son waking up. You won't see me terrified to sleep in case I wake up with a major dislocation that I won't be able to manage on my own. You won't see me.

So many of us do this. Our high functioning selves, and our disabled selves. We have internalised ableism so well that we condition ourselves to reinforce stereotypes. And I hear it and see it frequently, both deliberate and unthinking. Notes on individuals cars when parked in disabled spaces; “You don't look disabled". Until now, I’ve never given any quarter to this kind of questioning, because my health is my business, no one else's. But the time has come to be brave.

I am that person who needs to use a wheelchair sometimes. I am a “part time user". I am that person who doesn't always “look" disabled, because the times I clearly do I will do everything I can to hide my reality from the world. I am that person who does their very best to look as functional as possible. I am that person who is always in pain, but tries their very best not to show it. I am that person who hides their vulnerability until crisis forces it out there. And I am that person who deserves healthcare that fits them regardless of budget guidance, and it was on behalf of all users, but especially those users who don't fit neatly into a box, that I was in attendance, and that is why I am trying to be brave enough to tell my story now, to explain the struggles that many of us are facing.

My wheelchair does not fit my needs. I cannot guarantee that someone will be available to push me; and nor do I want someone to. I want independence for as long as possible. I want a lightweight chair that I can use and manage alone, that allows me to do the many things that I want to do without doing further damage to my joints or spine. But the guidelines issued by NHS England only allow for the provision of those chairs to “full time users"; which leaves individuals like me to choose to use equipment that doesn't fit or suit our needs, or not leave the house, or choose to damage ourselves further to achieve the things we want to achieve.

This isn't the way the system should work. Assessors need to be given the discretion to decide what provision best suits each individual. The cost of a wheelchair should not be of greater consideration than the independence of that individual.

I am not ashamed of my disabilities. They have helped to make me who I am today. I am stubborn, tenacious, determined, and resourceful. But I am also vulnerable in terms of my health needs, and worthy of provision. I should not have to hide my needs to function at the level I want to. I equally should not have to withdraw from the world to “prove" my level of disability due to a lack of effective provision. If I don't have what I need to help with my condition I won't stop trying to make the changes I want to see in the world; I will simply accept my long term health as collateral damage. And these are choices we should not be forced to make.

It is tempting to consider the issues surrounding the Millbrook wheelchair contract as one of a company simply failing to provide; but it isn't that simple, and is a reflection of many of the changes within the NHS as a whole. To their credit Millbrook representatives spoke with me for over an hour on Friday, explaining what their next steps are and how they are trying to remedy the situation and ensure that service improves. KCC representatives went to similar lengths, and I am grateful to all those who chose to meet with me. But the overarching issue comes from NHS England, and guidance that is so specific as to be useless for those of us who don't fit “easy" categories. If you give me a wheelchair that dislocates my shoulders and is impossible for me to use on my own, I won't use it. I will choose to damage my joints more instead in order to be able to live my life. And if I don't use equipment that is unsuitable, then I am not a “full time user" and therefore don't qualify for a chair that would make a profound difference to my quality of life, length of time for useable joints and ability to achieve at the level that I want to.

I didn't expect to be able to speak at the HOSC on Friday. But to be refused after being told how vital service users voices are to the consideration of this contract was humiliating, especially when most councils are happy to use their discretion to allow public contributions in Meetings in Public. I do believe in representative democracy; but I also believe that vulnerable populations often aren't accessed, don't often have ways in to conventional channels of representation, and need to be heard when it comes to their provision of care. I believe in that enough to choose to travel to Maidstone from Margate in spite of pain levels, just to be aware of the healthcare decisions that stand to affect my area.

It is hard to be seen as vulnerable in public, but the positive I take from this is that the effects of the difficulties of provision in relation to this contract were very publicly visible. Hard for me, but hopefully useful for councillors to see directly. I would like to thank again the Councillors who spoke for me, and the representatives from Millbrook Healthcare who met with me after the HOSC. I would also like to thank the KCC officers who did the same. And I would like the HOSC and similar bodies to consider that using their discretion to allow members of the public to speak on occasion would indeed “set precedent"; a very positive precedent, that allows marginalised communities to have their voices directly heard in front of the individuals who will be helping to decide on their healthcare choices.