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Disability Etiquette, part 10 – engaging with people with hidden disabilities

Couple pointing to a "Psychiatric hospital" notice, saying "but what if the wind changes and my kids all catch schiszopohrenia?"

Thanks to “Crippen” – www.crippencartoons.co.uk

In this final part of the series on “Disability Etiquette” we are going to look at one of the more difficult aspects of disability – people who don’t look or seem disabled, but are. Sometimes we will know they are because they tell us, sometimes they may choose not to tell us. This group of people cover a significant proportion of disabled people and can include a whole range of mental health conditions (e.g. depression, anxiety, schizophrenia, bi-polar, obsessive compulsive disorder and many others), learning disabilities (dyslexia,  dyspraxia, developmental disabilities etc), people with epilepsy, chronic pain, asthma, heart conditions, autism, HIV/AIDS – the list is endless, and there isn’t scope to cover them all here. The guiding principle, as ever, is to work with the person to find out what will be most helpful.

In this series so far we have covered:

  1. The basics
  2. Terminology
  3. Physical access
  4. Attitudinal barriers
  5. Communication tips
  6. Things not to say to disabled people
  7. Ways to be helpful to disabled people
  8. Engaging with people with sight or hearing impairments
  9. Engaging with people with unhidden impairments

Today I will look at a random sample of hidden disabilities:

People with epilepsy

  • Epilepsy is a neurological condition where people have seizures when the electrical system of their brain malfunctions. If someone has a seizure there is nothing you or they can do to stop it. Try to ensure they are safe by removing sharp objects from the area and make sure their head is protected. Stay with them until the seizure ends
  • After a seizure the person may feel disoreintated and embarrassed. Offer ressurance and some private time for them to collect themselves
  • Be aware that for some people, strobe lights can trigger a seizure

People with HIV/AIDS

  • People with HIV/AIDS have a suppressed immune system and so are vulnerable to infections. It is impossible for you to “catch” HIV/AIDS through casual contact such as shaking hands or hugging
  • They are, however, at risk from airborne infections, so if you have a cold or chest infection, stay away from them
  • People with HIV/AIDS are often stigmatised by others through ignorance, so ensure that you include them in activities, shake their hand and don’t shy away from physical contact to try to reduce the stigma

People with mental health conditions

  • This covers such a range of conditions, we can only look generically in the confines of this blog. People with mental health conditions may sometimes have difficulty coping with some everyday situations. They are almost never violent and are in far more danger of other people hurting them, or of them harming themselves than the other way round.
  • Stress can often make condition worse. Try to reduce the pressure in the role, and also encourage them to be open with you about how they are feeling or what they might need
  • Each individual will cope with their condition in different ways. The important thing is to set an atmosphere of openness where they can share their concerns and you will listen and act upon them. Where appropriate, make allowances for different coping strategies and accommodate as much as is practical and safe
  • If there is a crisis, be calm and supportive, ask if they need medication or if there is someone you can call, or ask for medical help if you think it is required
  • Remove the stigma around mental health by being open and honest. One in four of us will be affected by a mental health issue at some point in our lives, so it is not something to be ashamed or frightened of, but addressed appropriately

People with learning disabilities

  • People with dyslexia or other reading difficulties may require different formats – e.g. black font on a yellow background, or verbal information
  • Some people may need even very simple instructions written down – someone with auditory processing disorder may need something to be demonstrated or written down before they understand it
  • Don’t patronise the person or talk to them like a child – you may need to use simple language (a useful skill anyway) but remember they are adults
  • Allow people time to think things through and make decisions, and ask for further information if they need it. They may give you the answer they think you want to hear (for example if asked “do you understand?”) so ensure they do understand and be patient until they do
  • Routine can be quite important sometimes, so if things change, explain the changes and how they will be affected and give them time to adjust

People with ASD (Autism Spectrum Disorder)

Again, there are many stereotypes about this group which won’t apply to every person, but some general principles include:

  • Many people on the ASD are hypersensitive to noise and colour. A noisy working environemnt or lots of bright colours on the walls can be distracting and distressful. Try to find a quiet neutral working environment
  • Some people with autism take things literally – they may not understand some jokes, and sarcasm doesn’t usually work.
  • Many people with ASD make excellent workers because they would rather be left to get on with their task than become engaged in small talk, and so they can be signficantly more productive than their colleagues. Unfortunately sometimes this means they are seen as aloof or unfriendly, but they are just focused on the task in hand, and conscientious to the point of perfectionism on occasion
  • Structure and routine, and repetitive tasks can work well with some people with ASD, and many struggle with change, so it’s important to be patient and allow them to adjust to the change at their pace with as much help as possible

That concludes this series on Disability Etiquette, and of course we have merely skated over the surface, but I hope it has raised some awareness and created an apetite to learn more. Please add any comments below – I’d love to hear your views on this particular blog and on the series as a whole.

 

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5 Responses to Disability Etiquette, part 10 – engaging with people with hidden disabilities

  1. Mary C. Weaver, CSCS
    July 25, 2012 | 9:13 pm

    Jane, I’ve really enjoyed this series! I’ve said it before, but I do hope you will consider collecting all the posts and creating an e-book.

    And here’s one added comment, along the lines of what *not* to say to people who are depressed or anxious:

    1. “Cheer up! Things aren’t so bad!”

    2. “Relax! Stop worrying!”

  2. Nick
    July 26, 2012 | 3:04 pm

    Thanks for posting this Jane, it’s a really important topic. One of the problems with hidden disabilities, particularly mental health, is the stigma attached. It’s really hard for a person to tell colleagues that they suffer from depression, for example. Most people don’t understand it and automatically go into a narrative about the person not being able to cope under pressure, imagining emotional instability and worrying about setting off a bout of depression by saying the wrong thing.

    Before the knowledge of the illness they would have had no problem interacting with their colleague, and that person would have been considered perfectly competent at their job. Then after disclosure all of a sudden that colleague is given a label and a load of baggage to handle, and there are doubts about their competence. No wonder it so often stays hidden.

  3. James Coakes
    July 31, 2012 | 5:09 pm

    This is a big subject because it goes all the way to other issues including personal problems and stigmas.

    Perhaps if magazines didn’t airbrush models’ photos and celebrity culture didn’t promote the idea that there are perfect people out there it would be easier for society as a whole to be more inclusive and basically just kinder.

  4. Linda Mattacks
    August 8, 2012 | 3:51 pm

    Hi Jane

    “Hidden disabilities”: I’m not unsympathetic yet I think this area is a potential minefield if the sufferer elects to keep the knowledge to him/herself.

    If you sense there’s something wrong and the person isn’t just ‘being difficult’ yet their behaviour isn’t with reasonable bounds of ‘normality’ within the given situation(s), what on earth are your options in this politically correct world of the 21st century?

  5. Andrew Deacon
    August 10, 2012 | 11:43 am

    I’ve got Aspergers,medication for anxiety and depression plus dodgy knee and spine. None of which are visible but restrict me to an office. I’ve tried to be open but had nagging doubt that’s why I was redundant and still not working. That means I can have ‘good’ and ‘bad’ days for one reason or another. At times all I want is a quiet space to ‘chill’ for a bit- impossible in a supermarket,tricky in an office. Medication in itself can affect things like concentration and drowsiness. Often all I need is space to do things in my own way in my own time – breathing down my neck is not the way to get things done. I’m going to have to go through this with a new employer and hope they don’t run a mile.

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