Invisible but not Silent – People with Invisible Disabilities Speak Out

Blue Badge Insurance invisible disabilities

Contributed by Anthea Skinner

Do you have an invisible disability? People with invisible disabilities often face discrimination when they try to access disability services because people wrongly assume that they are trying to take advantage of facilities that they are not entitled to. At Blue Badge Insurance we hear about these incidents all the time from our customers and Facebook followers, so we decided to conduct a survey of people with invisible disabilities and their carers to gain insight into their day to day experiences. The results were fantastic! Over 600 people participated, outlining their experiences of being misunderstood or discriminated against, and offered some great suggestions about how they’d like to see things change. We want to send out a big thank you to everyone who took the time to fill in the survey or comment on our Facebook page – you’ve provided us all with a great insight into the lives of people with invisible disabilities.

What is an Invisible Disability?

The term “invisible disability” refers to any disability that is not immediately visible to the casual observer. It’s hard to estimate how many people live with invisible disabilities because they cover such a wide range of medical conditions and impairments. Our survey respondents alone listed over 100 different conditions between them, including impairments as diverse as spinal injury, cancer, dementia and vision impairment. For some people, their disability is only visible on “bad days” while for others, their disability becomes more visibly obvious as they age. Some people find that their disability is only visible in certain situations, such as walking long distances. One survey respondent even told us that their disability was “visible only in shorts”. For all of these reasons, calculating the exact number of people with invisible disabilities is very difficult, but researchers tell us that between 70 and 90 per cent of all disabilities are invisible. That’s a lot of people who may not look disabled, but who still need to access a wide range of disability services and accessible facilities.

Invisible Disabilities and Parking

Many invisible disabilities can affect a person’s mobility, making them eligible for a disability parking permit. People with a physical disability or chronic illnesses may be unable to walk long distances or may need extra room to enter or exit the car. People with cognitive disabilities or brain injuries may need help with equipment like seat belts, or to walk safely through traffic. While others need quick access to exits in case of panic attacks or medical emergencies.

Despite this, people with invisible disabilities often face harassment for using their disability parking permits because they “don’t look disabled enough”. The results of our survey reveal that this discrimination is disturbingly common, with 77 per cent of respondents stating that they had been harassed or insulted while using their parking permits. Of those people who had been harassed, 40 per cent said that it happened to them “all the time” or “frequently”.

Survey Results – A Quick Look

  1. 633 people took part in the survey.
  2. The respondents included people with over 100 types of disability and their family, friends, carers and support workers.
  3. 68% of respondents held a current disability parking permit.
  4. 77% of permit holders had faced harassment while parking.
  5. Only 8% of people reported their harassment to authorities.
  6. Of the people who reported to authorities, only 17% were happy with the response they received.
  7. 59% of people have felt compelled to change how and when they use their permit as a result of being harassed.
  8. Over 94% of respondents don’t feel that there are enough accessible parking spaces in public parking areas.

The Impact of Harassment

While we have been aware of harassment in carparks (see: People with Invisible Disabilities Face Harassment), it appears that the problem is far more widespread than we had imagined, with 76 percent of permit holders surveyed experiencing abuse ranging from glares, rude notes, verbal harassment and even spitting. The effects of this harassment on people who are legally entitled to use disabled parking is profound, with people reporting feeling frustrated, threatened, angry and offended. Many also reported that they were made to feel guilty, even though they knew that they had a right to use their permit. This harassment doesn’t just affect the person with a disability, it can impact on their entire family, with one person reporting “I have a young child and I am often scared for our safety and humiliated by the way some people speak to or look at us. I am sad and angry that my young child witnesses the nastiness of other people”. Abuse can be particularly difficult for those who are already struggling to cope with their disability, or who are still coming to terms with a new diagnosis. One participant told us “I’d just accepted that I had a disability and couldn’t walk far anymore, and I’d just lost my job due to disability discrimination. Then to be told I didn’t look disabled enough despite having lost everything I worked for in life to a disability . . .  it really tore me up.”

Sadly, 59 percent of respondents who had been abused in car parks said they have felt forced to change their behaviour as a result of their experience. These changes range from looking around to see if anyone is watching them when they get out of their car, through to exaggerating their limp or even using a walking stick that they didn’t really need to “prove” their disability. For some people the effects were much more severe. One parent had to sit down and explain the situation to their children to console them after an incident, while others avoided using their permit altogether whenever possible. One respondent was so distressed by the harassment that they had received that they stopped going out shopping altogether, saying, “I try not to go out as much. I get family members to go out and do my shopping for me! It’s not always possible though so I go without most times.”

Reporting Harassment

Although 77 per cent of the disability parking permit holders we surveyed told us they had received harassment as a result of an invisible disability, incidents of abuse seem to be vastly underreported, with only 8 percent of respondents saying that they had reported it to authorities. This under-reporting occurs for a number of reasons, with some people saying that they couldn’t find an appropriate person to report the harassment to, while others said were simply too upset or fatigued as a result of the incident and their disability to do anything about it. However, the most common response was that people didn’t think that authorities could or would do anything even if they reported abuse, with 59 per cent of people saying that they didn’t think reporting abuse would help.

Sadly, the experience of those people who did report these incidents shows that our respondents were right to be pessimistic. When people did report harassment, only 17 per cent received a response that they felt was satisfactory. Perhaps most disturbingly, a small number of people told us that they had been harassed by the very people who were supposed to help them, security guards, council rangers and even police. One person remarked “there is a council ranger who has decided that because I ‘don’t look’ disabled he is entitled to hassle me, demand to see my permit and tell me how I don’t look like I have a problem every time he sees my car. I’ve reported him numerous times, police say he’s doing his job, council don’t care.”

How do we fix the Problem?

Our survey of people with invisible disabilities and their carers highlighted some serious problems with harassment over the use of disability parking permits, but our respondents also had lots of great ideas about how to fix the problem. A staggering 95 per cent of respondents said that there was not enough accessible parking in their area and 90 per cent would like to see their parking areas better monitored for misuse. There was a lot of concern that this lack of well-monitored accessible parking caused members of the public to feel that they were actually helping people with disability by checking who used the spaces. One respondent pointed out that people needed to be educated that it was not someone’s looks that made them eligible to park, it was the presence of a valid permit and that “people should ask the question only IF they cannot see a valid parking permit”.

The need for increased education was a theme that came up regularly in our survey, and our participants had lots of great ideas about how this should be done. Some suggested changing the International Symbol of Access (currently a picture of a person in wheelchair on a blue background), to something more inclusive of a range of disabilities. Others went further and suggested that this change should also include more detailed signage at parking bays about who is legally allowed to use accessible parking.

Many people also advocated more widespread education campaigns about the varied nature of disability, with government-sponsored awareness campaigns, targeted curriculum in schools and testing as part of drivers’ licences and citizenship tests all being suggested. Some respondents also called for education campaigns targeted specifically at police, council workers and other people responsible for enforcing parking regulations.

Thanks for Doing Your Bit

Finally, we’d like to send out a big thank you to everyone who took the time to fill out our survey or take part in conversations about invisible disability on our Facebook page. You gave us a fantastic insight into the day to day lives of people with invisible disabilities and we hope that, over time, it will lead to a greater understanding of the wide range of disabilities and impairments that people live with. We are still sifting through the many comments and anecdotes that you shared with us, but the frustrations of living with an invisible disability were perhaps summed up best by one of our Facebook followers who commented “If one more person says ‘But he looks normal’ I may lose it!! Uneducated twits! Please show me what ‘normal’ looks like!”

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