ArticleMay 18, 2023by included

The Disability Price Tag: A Personal Reflection

The Disability Price Tag: A Personal Reflection

Well-known disability charity Scope, has released its latest disability price tag report. In these reports, scopes research endeavours to pinpoint the cost of living difference between disabled, and nondisabled individuals or households.

The latest report states that the disability price tag is now £975 a month, per household. It’s important to note that this price tag is to achieve the same standard of living as non-disabled households.

This is a huge amount of money, and for some without lived experience, it may be difficult to pinpoint where this goes. Here are some additional costs that disabled households have to factor in:

  • Heating or air conditioning/fan costs – for many people living with a disability or chronic health condition, temperature regulation is both difficult, and also a really important part of managing symptoms. We either choose upfront additional costs in maintaining temperatures, or we risk a significant increase in cost in time, money, and health, if we are not able to maintain safe temperatures in our homes and end up in poorer health.
  • Travel – for many of us, getting to shops, medical appointments, or work is not as simple as walking to a bus stop, or taking a train. Instead, we have to find a way to have private access to a vehicle that we can use as and when needed, or rely on taxis.
  • Household accessibility items – automatic tin openers, jar openers, shower stools, specific lighting, sensory-friendly clothing et cetera all add up.
  • Food – for people able to cook, this may look like pre-chopped vegetables or premade sauces. For others, this would be ready meals, supplements, meal replacement drinks.

I could go on, as I reflect on my own experience as a disabled, chronically ill, neuro divergent person.

It’s clear that it costs more to exist in a world not built for people with disabilities, chronic illness, poor mental health, or neuro divergence when you are affected by these things. Adding on the layer of gender pay gaps, inequality in familial and historic wealth, reduced employment and promotion rates of racialised people, and rampant ablism in recruitment and employment, when intersecting identities come together, life is tricky.

So what can we do about it? Well, it would be easy to say “pay your lowest earners more”, and it seems simplistic, but this is how to alleviate immediate struggles, stress, and chip away at inequality. Reviewing your promotion process, making sure that there is no room for unconscious bias, and that racialised people, women and non-binary people, disabled people, and others who are historically excluded, are not left behind. Consider a hardship fund, for those caught out by unexpected expenses, those struggling to make ends meet, and those who need non-judgmental assistance. Adopt flexible working so people can manage their health alongside work in a more balanced way. Explicitly voice your company’s position that health comes first.

In short, ensuring our colleagues, employees, and peers are paid a fair wage, is not only fair and just and right, but it is one of the best things that we can do for their health, and, may I bluntly say – it is suicide prevention.

Another little talked about additional price of being disabled or chronically ill, is time. It is often said that managing a disability can feel like a full-time job, and I’ve certainly felt like that. Having to track our symptoms and triggers, chase up appointments or results, and adapt our day-to-day life to accommodate our disability all takes up time. Cooking a meal, changing bedsheets, getting ready to leave the house, or even just work from home, can all take longer for disabled people. Factor in additional responsibilities such as childcare, caring responsibilities, work, maintaining a living space… In short, we don’t all have the same 24 hours in a day.

Want to learn more about the experience of disabled people? Watch this TED Talk by Stella Young, this TED talk by The Tripple Cripples, and this one by Maysoon Zayid.

If you’re not sure where to start with accessibility and supporting or advocating for disabled people (including yourself), reach out. We can help, and we want to.

Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder awareness month

May is Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder awareness month. As one of the conditions which affects my life in the most significant way, I’ve written a brief summary on Ehler’s Danlos Syndrome, and how you can support people who experience it.

What is Ehlers Danlos syndrome (EDS)?

EDS is a group of health conditions which primarily affect connective tissue. Connective tissue is essentially the glue that holds our bodies together, it makes up much of our organs, skin, and support for our joints. Essentially, those of us with EDS have connective tissue which is loose, unstable, and ineffective. EDS is genetic, and can be hereditary, however there is no clear blood test to identify it.

So, how do you get diagnosed?

To get diagnosed with EDS, it takes an average 10 years of going to and from doctors’ appointments. For me, it was just over this. To be diagnosed, you will be tested on certain hypermobility elements, called the Beighton score. Your medical history, family medical history, and own perceptions of your body and its sensations will be taken into account.

How does EDS affect people?

Because our joints don’t have the support they need, frequent dislocations and subluxations (partial dislocations), are common. In our younger years, this might be seen as flexibility, however as we grow older, our ability to bounce back can deplete. We are more likely to experience organ prolapse, difficulty healing, and never-ending fatigue. A physiotherapist once said to me that anything that I do it takes me 2 to 3 times as much energy as him, because not only am I engaging in the activity, but my body is also working so hard to keep itself together. Other common issues with EDS are: digestive issues, chronic migraines, mental health issues, difficulty sleeping… the list could go on. The main thing to remember is that it can affect people in very different ways.

What is treatment like for EDS?

There is no cure, so treatment is very much about managing symptoms. For many of us this means daily medication, physiotherapy, mental health support, supplements, and adapting our way of lives.

What can I do to help?

For many of us, the people that we work with can really alleviate some of the struggles. You can do this by opening up conversations about how we’re feeling, how our health is, and what we need. Taking some of the thought labour from – planning activities to be accessible, and being flexible for our day-to-day differences in abilities makes a huge difference. This goes for all disabilities and chronic illnesses, all mental health struggles and neurodivergence, having a conversation can go a long way.

I’m scared about saying the wrong thing, what should I avoid?

For many of us, the fact that you are attempting to have the conversation says a lot about your intentions. However, here are some phrases I’d recommend that you avoid, to be your most compassionate self:

What’s wrong with you? – Instead, try ”would you be willing to talk a little bit more about your health and how I can support you?”

“But you’re so young/ smart/ you don’t look disabled / I don’t think of you as disabled …” – Disability can affect anyone at any age, so try not to see disability as a singular identity, or looking any particular way. Any of these comments can feel invalidating, and make us feel like you’re not seeing us for us.

“Have you tried yoga / cutting out gluten / etc…” – For many of us, our relationships with our bodies or minds have been difficult. We will have tried our very best to manage our symptoms, and take care of ourselves. Unsolicited advice is something that we get a lot, as people try to feel useful, or make sense of the situation. But this can communicate to us that you believe we are in control of our disability, and a simple change would be enough to alleviate it. This isn’t the case. For many of us, accepting our bodies or minds as they are is a key part of managing our health and well-being. That being said, if you have a recommendation that you truly believe will be helpful, ask permission before sharing it. “I know you must be doing lots of things to help manage your health, but I came across this article/ a friend told me about this thing and I wondered if it might be helpful. Would you like me to share information with you? It may not be relevant, but it made me think of you.”

Most of all, be patient with us as we navigate our health, and believe us when we talk about it.