About a month ago I received the decision from the DWP regarding my PIP award. I had received an indefinite award for the higher rate mobility over 10 years ago, but due to the changes in this particular benefit and the Government’s insistence that everyone, regardless of how long someone was awarded DLA, must be reassessed.

Sadly, I no longer qualify for Motability scheme because of this assessment, thus have lost access to help with driving, the adaptations grants fund, and ultimately independence, which is what the damn benefit is supposed to be about 🙄. Spare £4K change anyone to help me see over the dashboard and reach the peddles next time I need a new car? If it was the old rules, I would still qualify.

Thankfully we’ve managed to find a solution to keep my current adapted vehicle and me, independent. It’s been an incredibly stressful, very scary and anxious process. The worry – immeasurable. This is not something one puts themselves through lightly.

The assessment I had itself was fair. It’s the new rules that are making life hell for people who need that extra leg up to get to the same level your average, non-disabled person takes for granted. Imagine how you would feel not being able to come and go as you please, having to rely on others to get about.

So what now for me? I sought advice on appealing. The welfare rights advocate is practical, and more or less says, well you’ve been given enough award to run a car on. “What about the cost of adaptations? The car I was about to take ownership of had over £4K worth of adaptations.” I mention. There’s an audible in-take of breath. You’ll only have a chance if you have strong medical evidence. There’s also stories of people who have had their awards taken off them completely at the mandatory reconsideration stage.

We are in a bind. I desperately want to appeal, but we need the money I’ve been awarded to pay for the car we have to keep me independent. I’m in no position to have my finances further played political football with.

It’s where people with dwarfism are at a disadvantage with the mobility aspect of Personal Independence Payments. As the new system focuses primarily on the medical aspects of a disability rather than what is socially experienced by the disabled person. Yes, we may be able to walk over the 20 metres, however people with dwarfism still face significant barriers to independence.

The Motability scheme isn’t just about getting a free car for a person with dwarfism. It’s having a safe means to move around an environment and society set up for those over 5ft tall. A Motability car is a refuge from the stares and negative attention from members of the public as people with dwarfism, like myself experience, as we go about our day to day lives. Then there’s the physical barriers. We simply cannot go to a car showroom, pick a car and drive it away. We need adaptations to be able to actually drive a car. Meaning we face significant extra costs to independence than your non-disabled person need not even think about. Let’s not get started car insurance and sky-high premiums to cover the cost of adaptations on the car, if you can find one willing to cover you (it is a very limited choice). Let’s just say, Go Compare isn’t an accessible option.

Some perspective…

Ok, yes, this is a horribly, horribly unfair situation I find myself in. One day I was disabled enough to qualify for assistance, now, because of new rules, I’m not, even though nothing regarding my disability has significantly changed.

I’m fortunate to have been awarded enough to keep on the road, even though we had to get into debt to do so. The award will go to paying this off. I’m still independent and have the means to be for the time being.

I’m incredibly scared about what will happen next time I need adaptations for a new car. I simply do not have those sort of funds and no longer have the means to access my main grant source to do so. I imagine there’s a fair few disabled people out there too, in the same position, wondering if we are going to become virtually housebound in the future or what challenges lay ahead of us.

The new assessment is a very blunt tool, which on paper looks effective, but leaves out a large spectrum of the effects disability has on a person. The personal care element is more reflective of the day to day. There are only two questions for the mobility section, with the emphasis being literally on just how far you can walk, not the challenges a disabled person faces in order to be independent. I really, really, really wish that the Government would realise that not all mobility issues/disability comes down to how far one can walk.

Nothing is going to change for me in terms of my disability. I’m not going to grow another foot and I’m still going to need adaptations to gain independence.

However, Governments do change, as does policy. We can hope that we have an opposition who are brave enough to challenge and change the current policy that has been set in place. Though it’s certainly not been the case the last 6 years.

The government says it wants to help people with disabilities. They have and are however doing their utmost to make it impossible. Cuts to Access to Work, ESA, along with the changes to DLA to PIP reflect this.

How long can such a significant section of society continue to be stigmatised by political rhetoric and agenda?

😪😒