I talked to my friend who has EDS today. I wanted to expand my awareness of what it’s like to experience an invisible disability.
EDS is Ehlers Danlos Syndrome (everything is too stretchy and fragile which includes organs & blood vessels), it is a genetic syndrome which affects the collagen in your body. Collagen is the thing that connects tissue and muscles. For this reason, people with EDS struggle with a host of body function challenges, from stomach muscles challenges to hypermobile joints that easily dislocate.
My friend also has a condition called POTS — postural orthostatic tachycardia syndrome (a form of dysautonomia which means dysfunction of the autonomic nervous system), which means any change in body position can cause her heart to race; causing light-headedness, dizziness, vertigo.
She described it as a condition that makes her allergic to gravity. It can be very challenging for people with POTS to acclimatise to a different body position; travelling in a car for hours, then getting out of the vehicle and straightening can elicit these challenging body responses.
Having both of these conditions simultaneously, common in for women in pregnancy, brings about a relationship with fatigue that isn’t present in most people.
It can be very challenging to walk across a car park, for example; that is a completely draining experience and leaves my friend with no energy to go inside and do the shopping that she intended to do.
In the UK, we have a blue badge for people like my friend who need special access to shops. It allows her to park close to the access point of the shop so that she can carry out this most casual of daily tasks.
In our conversation, we talked about the various challenges and stigmas that she faces in having this invisible disability — from the outside; she looks like a healthy, young, woman. Our materialistic, ableist, normative narratives would suggest that she’s more than capable of walking across a car park.
To receive benefits in the UK, you need to take a PIP — personal independence payment, test. This PIP test is a twenty-minute process where you go in, sit down and get assessed. The person with the invisible disability is judged in that twenty-minute window by a private company contracted to the government. Their job is to work out whether you have the conditions that you say you have.
They lead from disbelief. You’re guilty until you can prove you’re innocent.
In the UK, we have a narrative around people who seek benefits as ‘scroungers’ and ‘thieves’; it came out of the culture of shaming council house tenants who claimed benefits illegally and claimed more than they were entitled to. There are aspects to this which have been good progress for society, the job centre processes around benefits evolved — you had to be actively seeking work to get the benefits. I think this is a good evolution because it mentors people who seek benefits, gets their confidence levels up and encourages them to understand their skill set.
Many people forget where these people were conditioned and the widespread poverty that contributes to their self-esteem; how able they are to get a job and to hold confidence in themselves.
Translating that to people seeking benefits for invisible disability is unfortunate.
During the conversation my friend, who has an invisible disability said:
“No-one wants not to be able to work and provide for their family.”
The other aspect of accessibility is physical. Our city spaces are not designed with accessibility in mind. Brighton has cobbled streets and steps up to almost every shop. It is inhibiting people with disability.
The disability act was brought into law in 1995, why are new spaces not being designed with this purpose in mind?
My friend also told me a story of when she tried to see one of her favourite bands at Alexandra Palace; one of London’s most prominent, famous and biggest venues.
They claim to be an accessible venue, yet, when she checked what that meant, it was only the sense that they had ground access.
There weren’t accessible toilets; they couldn’t guarantee that she could stand on the accessible platform to watch the show as it was first come first serve and, if there was a problem for her during the show, she would’ve had to walk through the crowd by herself to get her out of the venue.
I worked in venues as a sound engineer for ten years, I did see a lot of great examples of accessibility, and I know that security teams try to include that in their operations, yet, how is it that Alexandra Palace can’t guarantee this?
A young woman wanting to see her favourite band is a natural occurrence. I know during this time of COVID, we can all understand the heartbreak not being able to do that. For folks who live with a disability, this is a regular occurrence.
I wanted to spend some time on the frame, and even the word disability implies that they are somehow ‘less than’ able folks. I understand labels can be an empowering thing, to people who suffer through symptoms that they cannot name and have no awareness of whether it is normative for their condition.
The social model of disability means the people are disabled by society being inaccessible to them, not because of their medical conditions.
Some people say ‘people with disabilities’ or ‘differently abled’ but the social model would argue that that is wrong, that these people lack the ability to be ‘normative’. Slightly off topic, but autism is the same, these people have incredible gifts and talents and they don’t fit the normative model.
Having a disability comes with a significant amount of shame culture. If you’re in a wheelchair people infantilise and patronise you, they might look at your partner sympathetically. They might say things like ‘I don’t know how you do it’, to the partner, like the disabled person is such a burden, like the only thing that matters is the material body and that the heart and soul connection doesn’t exist.
There are narratives where people say ‘you’re so courageous and strong, you’re so inspiring, I couldn’t do what you were doing.’
Meant to be encouraging, however, there’s an aspect to this that belittles the disabled person. They didn’t choose their condition; they are getting by in life like the rest of us.
Another way that this shows up is in the saviour complex; the need to be a ‘good’ person who helps vulnerable people so that they can feel comfortable. Much like charity, this ends up with some undesirable outcomes.
There was a story of a man who used a wheelchair in Brighton; he knew where the accessibility to the seafront walkways was for him, he knew how hard he needs to pump the chair to get to the top without sliding back down or falling out at the top.
A person came along when he was halfway up one time and offered to push him. He refused, but the person went ahead and pushed him anyway, pushing him so hard that he fell out of his chair when he got to the top. A real violation of dignity and the member of the public was not trained in handling a disabled person, helping them to get back in their chair.
When disabled people rightly express their anger and disgust at these kinds of scenarios, the reply being a phrase such as ‘chill out, I was only trying to help’ or ‘why are you so bitter?’
There is no consideration of the disabled person’s dignity, authenticity, values and preferences in these scenarios. What would you do if someone came up to you and pushed you up a hill without your permission?
Often wheelchair users see their chair as an extension of their person. It violates personal space to enter that without consent, the natural response to that is anger. So next time you want to feel better by helping a disabled person, please consider their dignity and ask for consent before you do it.
The other part of the shame is around being vulnerable in western society. I have talked at length about how ableist the capitalist system is. I don’t have the time in this article to go over all of that, let’s just say that it pushes all of us to honour materialistic and ableist goals. We are taught that material progress is paramount.
This translates onto disabled folks. They see pity, scorn, saviour complex and infantilisation as the primary go-to responses towards them.
The patriarchal model of white supremacy also encourages us to dehumanise everyone outside of ourselves and our families. It’s incredibly dehumanising to be met with these responses and have no access to an honest and real conversation about how you might feel differently to that.
Shame systems operate by maintaining secrecy; maintaining shame. This requires effort, and inevitably every person is looking to offload the burden of that shame onto a more vulnerable person. Both to get rid of the inner conflict in themselves and also to feel better about not being the most vulnerable person in the room. In the family system, this means that the youngest child will often be the black sheep, or the troubled one because they become the scapegoat of the shame system. Collectively, people who live with disability become this.
Another aspect is the dynamics between women and men. My friend described to me that doctors would not allow her to make her own decisions about her treatment until her partner (a man) was present. This could be down to the fact that he does not struggle with a disability or mental health, yet, it is also a significant mark towards the dynamic that says that a man’s voice is more valuable when making a decision. Why should the decision about your wellbeing not rest on your shoulders? You may decide to discuss it with your partner, and that is your prerogative.
There is something called DOLS — Deprivation of Liberty Safeguards, in the UK for someone who doesn’t have the mental capacity to make their own decisions; that is a lengthy and serious process. If someone is without a DOLS, then they should be able to have agency over their treatment.
Shame is incredibly damaging to self-esteem, wellbeing and mental health. It’s challenging to break free from the cycles of shame so that you can live the life you want to live.
Collectively, we need to think harder about unburdening people who struggle with disability from these narratives.
Communication with dignity
I mentioned this in this article previously; I detailed all the ways that you can ensure dignity in relating. The effectiveness of communication is how another person meets your words.
I detailed some communication tips around trauma in this article. In many ways, communicating with people who have been through trauma is very similar to communicating with people who experience invisible disability.
The disconnect here is that we assume that people who don’t have a visible impairment will think and feel the way that we do. That your life experience; the values and markers of understanding that you have will be the same for them.
The experience of having an invisible disability is not similar to the normative narrative.
A few phrases that seem challenging to someone with a disability:
- How are you?
- What have you been up to?
- What’s wrong with you?
- Why are you bitter?
“How are you?” promotes a sense of solidness, as does listing things. It can be challenging for someone who is experiencing significant challenges with their body. It’s better to frame it in a more fluid perspective, consider:
- Is it a good symptom day, or a bad symptom day?
- How are you feeling?
- What are you feeling?
- What’s your experience like today?
Like the story at the seaside ramp with the disabled man in Brighton, we can’t always assume that someone needs to, is prepared, or has the energy to talk about their life experience.
Access to mentors
Access to mentors is essential in life; you cannot know where you want to go unless you first transcend the boundaries of the situation you’re in, in your imagination. Unless you have an extraordinary imagination, and a reliable, unshakeable, self-esteem, you’ll need a mentor.
Finding a mentor is challenging with an invisible disability because society doesn’t fully value the conditions; the experience of the PiP [check] test is a classic example, the people in authority are looking to call you out, not call you forward.
GP’s lack understanding, they are overworked and under-resourced. The way that the NHS functions in the UK means that health notes are scattered amongst many organisations who don’t communicate with each other. EDS affects many different body systems, so you need to see lots of various specialists across separate health trusts. The GP is supposed to bring all this information together and ensure that you’re progressing as you need to in your treatment; except you wait hours for a twenty-minute conversation with the GP, that’s not enough time to explain to him your case history, let alone get the correct advice.
I’ve had to sit in a GP meeting and tell them that I’m suicidal before, do you think this system is set up to safeguard people who are going through these significant life challenges?
Now we get to societal expectations; this is a tough one because it deals with taboo and shame. I’ve mentioned it in previous articles; shame can be healthy. It can be a way to understand our finite nature and to seek help from faith and community.
Taboo is the boundary between what is not acceptable to society and what is. It will always exist; in many ways, it is helpful. We wouldn’t want to murder to be on the other side of the taboo line. It exists beyond taboo because it is not useful to society.
Disability is another taboo subject which perhaps doesn’t belong. It is not talked about; there is judgement, criticism, blame and toxic shame attached to these conversations.
As I mentioned previously, people become saviours without consent; they pity, demean, and infantilise people with disability.
Needing to be a ‘good’ person is problematic because there will always be ignorance, and there’ll always be actions with good intentions that are received with pain and confusion. That doesn’t make you a bad person; it makes you a human being. It means you did something bad at that moment. Having a fragile identity means that you won’t accept that this act has hurt someone, and you’ll seek to explain it away with your thoughts.
Too often, people with an invisible disability are on the end of assumption that they are cheating the system. The physical appearance elicits a sense that you ‘should be like everyone else.’ A blue badge parking space is challenged, or use of the accessible toilet. These challenges come across as aggression and make an already challenging condition to have in a social environment, much worse.
If you had barely any energy to function, say you’re hungover — that’s the closest parallel, consider going out shopping, consider going to the toilet that you’re entitled to use, coming out and being challenged for using it. What do you think your response would be?
Please, let’s consider someone else’s dignity and their experience of life before we push our assumptions onto them.
There has been progress on this front; I heard an announcement in Sainsbury’s the other day saying that some people’s disabilities are not visible and that the customers please consider this in the light of coronavirus. The pandemic is changing so much in the realm of awareness. Long may that continue.
I wanted to add a section on misunderstanding because I believe that to be the biggest issue in this conversation.
Both sides are moving from a good intention, the people who are policing the toilets are trying to do so to ensure that the people who need them get to use them.
It only requires a slight shift in perspective to make this a very empowering scenario. If you seek to understand someone’s life experience, then you will get to a place of connection. If you lead with curiosity and genuine interest, you will see a more empowering conversation for both.
I know what you’ll say: I don’t have time for that. Honestly, that’s a poor excuse. Curiosity and authentic interest save you time because these reduce misunderstandings and disconnections. They allow both people to exist in their realness and truth; that leads to a great experience quicker, and it might even mean that the conversation finishes early because both have said what they needed to say.
This conversation isn’t about silencing one party; it’s about evolution.
This conversation isn’t working, one party in the conversation is being shamed and silenced and experiencing significant poverty and hardship. Let’s wake up to that. It’s not fair, and it needs to stop.
The next step that we can all achieve is to think and feel our way into how we will each bring curiosity and genuine interest to a situation that we don’t fully understand.
Not fully understanding a situation doesn’t always come about in confusion; sometimes you feel anger, despair, panic, sadness and a whole host of other sensations. Not understanding is an essential part of feeling unsafe and insecure. Take a breath, allow the breath to be the only thing at that moment, find your space, find your loving centre and then lead with that.
These people are people too. Can we really accept the burden for them, of merely surviving in western society?
They want to thrive too.
Mental health is not only a product of nature; it balances around nurture too. The environment that someone exists in, the challenges and weights that they experience, contribute to the overall mental health. Giving someone a connective moment can help them relieve the burden of their experience. When you have a physical condition like EDS and POTs, it’s not going away; you need to manage it every day, this creates its own challenges. People with these conditions don’t need the extra stress of dealing with judgement and assumption.
This post was previously published on medium.com.
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Photo credit: Napat Saeng on Unsplash