Their Privileges Are Showing

How to tell the nation’s more vulnerable that you have no clue about the realities of their situation? Answer: By making life infinitely more difficult for them with one simple administrative change. Having to score four points in one category to qualify for personal independence payment (PIP) – even though each category is so subjective, variable and open to biased interpretations – is offensively insensitive.

This is not helping disabled and vulnerable people – it is directly adding barriers to essential lifesaving financial aid. Aid that is still subpar but better than nothing. The long-term harm this will do is incalculable, never mind the cost impacts that will be shared by NHS, Local Authorities, and police departments across the country.

Sure, they'll save money on the welfare system, barely, but at what cost? At the cost of real, living, breathing, and striving lives. These last few months, I have already seen a rise of verbal abuse by the public towards disabled persons trying to live their lives – trying to use buses and access services. Strangers calling disabled people, like me, lazy and faking dole dossers. All because they're getting the message from our very Government that we are less than them because of our disabilities.

The government has made it look like disabilities are a choice, that we over-exaggerate our struggles to avoid work. When, actually, we have to work twice as hard as other people just to do basic daily tasks that is a privilege that everyone else takes for granted. Tasks that we already have to dehumanise and degrade ourselves in disclosing to get financial aid in the first place. Now, we face more degradation but with less hope of support or of life saving aid.

Without PIP, I’d starve – the cost of food these days, on top of the cost of utilities. PIP is the only thing keeping me afloat financially, with the extra costs my disabilities place on my budget, which vary month to month, as unpredictable as my own body’s capabilities.

The DWP has shown that they don't care about the lived realities of disabled and vulnerable persons. They care only for those persons who are deemed valuable in their eyes – the ones they can exploit through poor working conditions and low wages.

While I do not believe that I, nor anyone, should have to disclose their personal information in this public way, I will share some of my lived experiences concerning the proposed PIP score changes, with the hope of waking people up to the injustice of these unfair amendments. I will talk specifically about one of the categories, preparing and cooking food, which is potentially the easiest category to score 4 points in – especially if you are someone who has no experience of the PIP system. It's important to remember that when discussing our disabilities for PIP assessment, we must talk about our abilities on our worst health days and not our best. This is extremely difficult for many disabled persons who have to train themselves to be as "normal" as possible, and downplay their disabilities in daily life (so as to not be shunned, shamed, isolated or blatantly abused).

The recent change of having to achieve ‘the 4 points in one category’ to qualify for the payment is cruel and does not consider individuals with disabilities that vary and are unpredictable. For example, I experience incurable chronic physical disabilities and mental health disabilities. On good days, I'll try to batch cook and prepare homemade healthy microwave meals, but I also always have ready made microwave meals prepared if needed. My shopping trips are done online but planned carefully to prepare for harder days. I do not know how many hard days I'll have each given week or month: if I'm lucky, only a handful, but they typically persist throughout the month.

An important point for the PIP assessment is how much I can do on my worst days. On these days, I can't get out of bed. I'm completely immobilised and unable to move or tend to my needs, let alone prepare or cook food. On my worst days, I'm in too much pain to eat, to sit up, to think, to talk, to smile. On my worst days I'm fully incapacitated. My description seems like a slam dunk for scoring high in this category for the PIP assessment right? Yet, it does not because I don't qualify for assistance and can't afford to seek assistance myself on my current PIP allowance due to food and utilities costs these days. I have no proof that I'm incapable of preparing or cooking food on my worst days. This means that some unknown DWP assessor - with the privilege of having no lived experience of living with a disability - could assume that I'm exaggerating and deny me these points. If it's that easy to deny points in the “easiest” of categories, can you see how easy it is to deny points in other categories, regardless of our abilities on good or bad days. The assessment is already designed against us by its highly subjective terminology and lack of real disability awareness.

And I'm lucky, I've got so many strategies in place; mostly through years of trial and error. I'm lucky that I still have the cognitive ability to maintain this level of independence and autonomy. I've had to develop these strategies because I had no choice, no access to help due to funding cuts and lack of disability awareness.

I am unable to access formal assistance (such as house helpers services, which is the form of assistance that could satisfy the DWP of one's disabilities). Instead, I have various strategies and unofficial assistance (that aren't seen as evidence for the DWP). For example, my 'prepare and cook' assistance on my worst days is my local takeaway. A costly assistance but oftentimes it's the difference between eating something or going hungry. Another form of ‘assistance’ is through a wonderful neighbour who always takes my bins out and back in each week - which is helpful on my worse days where I am fully incapacitated.

However, relying on the kindness of neighbours and strangers is not seen as evidence of disability for PIP assessments.

The new PIP assessment changes have made me fear what would happen if I were to lose my PIP, limited as it is - I'd probably end up too unwell and unable to care for myself and my children. Were my health to deteriorate to a point I couldn’t provide basic care for myself and family, the additional support would be paid by the NHS and Local Authority. This is something which is happening to thousands of families and which costs the government more financially in the long term despite their claims of saving through these proposed changes. No one deserves this.

We deserve to live, we deserve to enjoy life, we deserve nice things and fun life experiences like everyone else. We didn't choose to be disabled and like everyone else were making the best of what life has given us. We deserve fair income when unable to work and fair treatment regardless of our "workability status".

Whatever Government officials and PIP assessments say, they don’t understand that if your body works for you and if you don't have to plan and develop strategies to simply pour yourself a cup of tea, that is a privilege.

You can't know what it's like to have a life long disability without having a lifelong disability. Even in the disabled community, we understand our wonderful experiences and acknowledge that we don't fully grasp others' experiences with their bodies. But we understand.

The proposed changes made by the government reinforce that they choose not to care about us. How long until they stop pretending to care about you too?

We must reverse these blatantly harmful policy changes to PIP assessments, provide more direct support that is led by real people with real lived experiences of living with different kinds of disabilities and update the perceived value of the person behind the disability.