Invisible Disability: Seeing is Believing
15 August 2022
Following on from my serious accident, parents have told me of suicidal issues involving their children, requiring significant CAMHS involvement. In relief, another mother has told of their appreciation for the school where she’d moved her child. The new school seemed to have seen the needs of their child in a way the previous school had not, despite requests.
A teenager, with their parent, has described how difficult it is to explain their medical problems to an employer at work and their teachers at school. They knew they looked well during the conversation. They knew they were neither believed or visibly believable.
These encounters, and so many more, seem to have come out of the cupboard. None were in a professional capacity. These discussions often begin whilst walking the dog. My own disability experience must make me more approachable. Or perhaps I see things more clearly. Perhaps the cupboard was never there.
An estimated 14 million (20%) of people in the UK have disabilities. Approximately 10 million (72%) of these are invisible.
It will always be impossible to know the exact number of those with disabilities due to definition, discovery, and disclosure issues.
Disability
Section 6 of the Equality Act 2010 describes disability as “a physical or mental impairment… the impairment has a substantial and long-term adverse effect on the ability to carry out normal day-to-day activities.”
Post coma, it took some time to learn to walk again. Learning was hindered by poor balance and bipolar vision, and other invisible disabilities. I have been told, post-accident, that ongoing experiential awareness of my reduced capacity will be difficult to live with. It is.
I no longer have a visible hospital wheelchair, and my damaged vision never required a white stick. I’ve also avoided a hearing aid offered following accident damage to my left ear. Physically I now look healthy. Others fare less well.
Invisibility
I have been told it will be tough when those looking at me think I’m fine, unaware of my difficulties because my ongoing issues are invisible. There are few reasonable adjustments.
The Disabled Persons Transport Advisory Committee (DPTAC) has an excellent position statement on non-visible disabilities. Their vision is that disabled people should have the same access as anyone else.
Their disabilities list includes my traumatic brain injury (TBI) and diabetes. I now have diabetes insipidus caused by accident damage to a hormone-controlling gland in my head. My diabetes (siphon/pour) is not the same thing as diabetes mellitus with the sugar level control more people know about.
Anxiety and depression are included too. The BBC recently reported that 8.3 million (13%) people in the UK, like me, received antidepressants in 2021-22.
Invisible Disabilities are diverse, and any list will, unfortunately, exclude someone.
On the DPTPAC website, we read.
“DPTAC has decided to standardise the term ‘non-visible disabilities’ after the following concerns were expressed:
‘hidden disability’ implies that people are purposefully hiding their disability
‘invisible disability’ implies that the disability is in that person’s head and doesn’t really exist
‘less visible disability’ implies that the disability is partially visible, whereas in most cases it’s not visible at all”
DPTAC believes it would be helpful to standardise terminology for non-visible disabilities.
My brain injury is not externally visible at all, but the damage is clear in a Magnetic Resonance Imaging (MRI) brain scan. Disabilities are real, seen, or unseen. Some disabilities can’t even be seen with a medical kit. My post-accident epilepsy diagnosis could not be confirmed by a medical investigation.
I had an electroencephalogram (EEG) test for photosensitive epilepsy. No seizure was provoked. I received an Epilepsy diagnosis nonetheless due to a 70% likelihood following TBI. I now need to take special care and more medication following a year without a driving licence.
According to epilepsy action, “If you have epilepsy in England, Scotland or Wales, you are likely to be classed as disabled under the Equality Act.”
Visit this BBC website, for a video, with someone describing what it is like to live with their invisible disability. Invisible disability information is also on this Wikipedia link.
Vital but less visible information is often there to be “seen” by those seeking sensitively, professionally, and with care. We may reply, “I see”, to an explanation, proclaiming we understand. Sight and vision, for appropriate future action, requires more than sensitivity to light.
On page 3 of Keeping children safe in education 2022, we read, “We use the terms “must” and “should” throughout the guidance. We use the term “must” when the person in question is legally required to do something and “should” when the advice set out should be followed unless there is a good reason not to.”
In my experience, schools should do better. With regard to the Equalities Act 2010 and associated guidance, some schools must do better.
Seeing and perceiving facilitate believing.