Helen Jaques is the manager of MAIN, a Tees-based charity. MAIN helps people who live with a range of disabilities, by giving them the skills they need to live an independent life, while having fun and making friends. MAIN works with children and adults, parents, carers and professionals. Here, Helen discusses the difficulties of invisible disabilities…
Whilst the international symbol for disability is widely recognised, many people still assume that this applies only to people who are wheelchair users; others believe it also applies to people who use other walking aids or have a visual impairment and carry a white stick and have a guide dog. All very much visible clues to a disability, however these are out dated assumptions as disability reaches a much further group of people.
Approximately 75% of people who declare themselves to have a disability in the UK have what is known as an invisible disability. These are people who have conditions that are not normally life threatening but can considerably affect their quality of life. Although many people can appear to lead normal lives without disclosure of their hidden disability, for others it can be a hindrance that their disability is not ‘obvious’. They include conditions such as brain injuries, Lime Disease, diabetes, epilepsy, mental health conditions including depression, bipolar disorder, schizophrenia, anxiety and ADHD. This is by no means an exhaustive list.
People diagnosed with an autism spectrum disorder (ASD) are included in this group. They have difficulties with socialisation, communication, changes to their regular structure and routines and a differing sensory profile to people without the condition. This pervasive condition affects them in every way of their lives. However, visibly they may appear to look like any other ‘normal’ person. In addition, their condition leads them to have increasing anxieties.
If we just consider one aspect in relation to people on the autism spectrum and consider the sensory challenges of a multi-storey car park. This may include amplified sounds of cars and voices; differing visual perceptions due to uneven lighting; smells of fumes; stairwells or escalators, which they struggle to negotiate due to their difficulties with balance and special awareness; negotiating walking through the rows of parked cars due to their difficulties in body awareness. These sensory differences can lead a person with autism having increased anxieties and due to their lack of ability to be able to communicate effectively can consequently lead them to going into crisis. Hence, why some of the very physically able children who access MAIN’s services have a need for the blue badge parking permit.
Over ten years ago I did some training with a man who was a wheelchair user regarding accessibility for people with disabilities. He said, “If you get it right for a wheelchair user you get it right for everyone with a disability.” I politely challenged him on his perspective and brought his attention to the sensory challenges of a person with ASD. He had no idea that the physical presentation of the world caused so many challenges to people with ASD which posed no such barrier to those who had a physical disability alone.
The introduction of the sunflower lanyard scheme is helping to raise awareness of invisible disabilities with many large stores and airports adopting the scheme and raising awareness among their staff in arranging for training in invisible disabilities for their staff.
As the parent/carer of a young adult with ASD, I have experienced positive experiences when wearing the lanyard. However there is still work to do. I overheard a member of staff at an airport once say, “There’s nothing wrong with half these people who are wearing the sunflower lanyards. They are abusing the scheme”.
Many of the barriers people with ASD face can be removed with just a little bit of thought and understanding about the condition, thus eliminating the individual from feeling uncomfortable about their impairment and shortcomings. Environments need to be planned in order to accommodate all needs so people with invisible disabilities don’t have to feel uncomfortable about disclosing them, but more important it is the people working in these environments who need to fully understand disability, invisible or not. Until this happens, it will not bring about social change.
During the Covid pandemic, one of the things that has highlighted ASD and disability is the wearing of face coverings. People with asthma, COPD and other respiratory conditions are exempt. Due to their sensory sensitivities, people with autism too are exempt. MAIN provides services for adults with ASD in Durham. Our team have faced many challenges with some GP practices refusing admission to our adults because it was NHS policy (although hospitals accepted the legislation), despite the Government stating they were exempt. Many heated exchanges took place with suggestions of risk assessments needed. No one seemed to fully understand that no risk assessments were necessary. They were exempt. Simple. After several weeks of fighting for our service users, we did manage to win the battle. But it is a battle we should not have had to fight.
People with invisible disabilities should not be expected to change what they are. Society and the environment are what needs to change.
Helen Jaques has worked for over twenty years in a range of educational and community settings supporting people with Autism Spectrum Disorders (ASD) and with associated disorders from ages 3 – 45 years. Throughout this time she has enjoyed a range of roles associated with the condition. She completed her Bachelor’s degree (B Phil) in Autism in 2011 and her Master’s Degree (M Ed) in Autism in 2014 and is a Fellow of the Society for Education and Training.
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