Categories
Celebrities Inspirational People Mental Health SEND

From genies to presidents: Robin Williams

“I want to help people be less afraid”

A wish written by Robin Williams in his Twelve Step book

Actor and comedian Robin McLaurin Williams was born on July 21, 1951, in Chicago, Illinois. When he was 16, his father retired from his job as a car salesman, and the family moved to the San Francisco area. Robin attended Claremont Men’s College and College of Marin before getting a scholarship to study at the Juilliard School in New York City. There he befriended and became roommates with fellow actor Christopher Reeve. Robin later tried stand-up comedy in San Francisco and Los Angeles, developing a successful act. Williams eventually moved back to California, where he began appearing in comedy clubs in the early 1970s.

By the mid-1970s Williams was guest starring on several television shows. After guest appearances as the alien Mork on Happy Days, he was given his own show, Mork & Mindy (1978–82). The series offered Robin the opportunity to transfer the passion of his stand-up performances to the small screen and provided an outlet for his many comedic talents. Mork & Mindy proved a big success and was key in launching Williams’s film career.

A string of successful film roles for Williams followed over the years, showcasing his stellar comedic talents as well as his ability to take on serious work. His first major role came with Good Morning, Vietnam (1987), in which he portrayed the irreverent military disc jockey Adrian Cronauer. The role earned Williams his first Academy Award nomination.

In the early 1990s he lent his talents to a number of successful family-oriented films, including Mrs. Doubtfire (1993), in which he played a divorced man who impersonates a female nanny in order to be close to his children, and the animated feature Aladdin (1992), in which he voiced the forever famous genie. He later portrayed Teddy Roosevelt in the comedy Night at the Museum (2006) and two sequels (2009, 2014). He provided voices for the animated films Happy Feet (2006) and Happy Feet Two (2011). Williams was side-lined with heart problems in early 2009, but he returned to work shortly thereafter.

A composite image of three different pictures of Robin Williams in a row. On the left, Robin Williams is shown in his Mrs. Doubtfire costume: an old white lady with grey hair pulled up into a bun, wearing large circular glasses, a white shirt and blue and white cardigan. She is holding a feather duster. In the middle Image, Robin Williams is shown back to back with his character from the animated movie Aladdin. The genie is blue, with pointy ears and a thin black beard and think black eye brows. On the right, Robin Williams is shown in his costume from Night at the Museum. He is dressed in a United States Veterans uniform, with a moustache and small circular glasses.

On August 11, 2014, the 63-year-old comedian had passed away in his California home. His publicist released this statement:

“Robin Williams passed away this morning. He has been battling severe depression of late. This is a tragic and sudden loss. The family respectfully asks for their privacy as they grieve during this very difficult time.”

In a statement issued by his wife on August 13, she had said that her Robin had been diagnosed with Parkinson’s disease which he had not disclosed publicly. Parkinson’s disease is a disorder of the nervous system that progresses over time, affecting movement and speech. She also confirmed that the actor was battling depression and anxiety. Robin’s wife statement also expressed gratitude for the outpouring of support following her husband’s suicide and touched on the legacy he left behind:

“Since his passing, all of us who loved Robin have found some solace in the tremendous outpouring of affection and admiration for him from the millions of people whose lives he touched. His greatest legacy, besides his three children, is the joy and happiness he offered to others, particularly to those fighting personal battles.”

In November 2014, reports surfaced that prior to his death Williams was also suffering from Lewy body dementia, a type of progressive dementia often found in people diagnosed with Parkinson’s disease. In December of that year, Night at the Museum: Secret of the Tomb, the final film in the series, was released in which Williams reprised his role as Roosevelt.

Years after his death, Williams’s show business career and final days remained a captivating subject for fans. Dave Itzkoff’s Robin became a best-seller following its May 2018 publication, and two months later, HBO offered a character study of the comedian via footage of stand-up clips and interviews with family and friends in Robin Williams: Come Inside My Mind.

Robin Williams looking up he's wearing a black t-shirt and has a gold chain necklace around his neck. The background is black. Quote reads; No matter what people tell you, words and ideas can change the world. -Robin Williams

If you, or someone you know, is struggling with mental health difficulties and/or suicidal intent or ideation, the following organisations may be able to help:

Categories
Bullying Education Mental Health SEND Social

How Language Impacts Lives: Stigma and Ableism

Contents

  1. Introduction
  2. What is stigma?
  3. Bullying
  4. Our role in ableism
  5. Self-description
  6. The power of participation

Please note that this post has since been edited to update the blog the group’s new name: ATLAS (previously SYAS).

Introduction

Recently I have been facilitating some of the virtual group meetings with the ATLAS members. As this week is anti-bullying week, the young people have been sharing their experiences with stigma and bullying as well as discussing ableist language and how they self-describe.

Overall, it is felt and experienced that stigma and bullying are still prevalent. ATLAS are telling us that we all need to be doing more to increase the visibility of additional needs and disabilities, as well as mental health (find out more on comorbid mental health with additional needs and disabilities), throughout society.

One of the repeating themes of discussion has been the importance of language in their experience as young people with additional needs and disabilities; how the language used to define and describe them has a direct impact on their lives.

What is stigma?

In this context, stigma is used to refer to the negative stereotypes and associations that society or individuals hold against a group of people. This results in prejudice and discrimination against the stigmatised group at social and/or structural levels.

In some cases, individuals from the stigmatised group can internalise this stigma, which affects how they view themselves and the expectations they have of themselves. This is known as self-stigma. An example of this which I have heard frequently and struggled with myself can be seen with dyslexia.

Due to the stigma around dyslexia, unfortunately you often hear people with dyslexia calling themselves words like stupid, or setting low expectations for themselves. They may be used to similar treatment from the people around them since diagnosis or had heard of the stigma before realising they were dyslexic themselves. Our member Ryan touches on this in his blog on dyslexia.

Stigma can lead to people being stereotyped, isolated and discriminated against. Ultimately this can have a variety of impacts on the targeted individuals, including avoiding diagnosis or treatment, and becoming the target of bullying.

Bullying

People “make fun of disability in my school.”

There are many different types of bullying and many reasons why someone may be bullied. When it comes to young people being bullied for their additional needs and disabilities, ATLAS felt like this was predominantly because of two factors: being different and the stigma surrounding their additional needs and disabilities.

“If you are different you are going to get bullied”

There is “not much understanding about how to stop [bullying and stigma]… people are still ignorant”

Stigma-based bullying is especially complex because it not only requires localised anti-bullying action but also a society-level approach to reduce stereotypes and prejudice on a larger scale.

An important part of tackling bullying aimed at people with additional needs and disabilities will be to address the widespread ableism and lack of disability awareness in our society.

“I don’t want to be made out to be ‘special’ because I have needs.”

Our role in ableism

What I can do and achieve is “underestimated by the college and my peers” because of my diagnosis

An ableist society is defined by its assumption that people without additional needs or disabilities are the norm. The way that society, physical structures and policies are designed is inherently exclusionary and inaccessible. This results in the limitation and undervaluing of people with additional needs and/or disabilities.

The way ableism presents is complex and can impact people on a variety of fronts. This ranges from the texture of a pavement surface or the lack of braille on building signs, all the way up to public attitudes and the very language used to define us.

“[Ableist] language is used on all official forms from the government. Ableist language is used as the basis of everything.”

People who do not experience and/or are not knowledgeable about additional needs and disabilities may find it hard to see how others can be disadvantaged by design or realise the existence or extent of stigma.

“Sometimes it’s not the words themselves, but the attitudes … You can use the word disabled in a derogatory fashion.”

I would like to recommend that if you are ever in doubt about the language you are or will be using, please ask the people described or impacted by that language.

Self-description

The way in which words are used to describe people shows how society sees them and acts as a perceived measure of both their worth and overall contribution to that society. How we define ourselves reveals our internal existence and true lived experience.

“Everyone around me assumes that I am not able to do things. Whereas I can’t do some things some days, but I can other days … They had only read the language on my report and not met me. Then I spoke to them on the phone and they realised their mistake, encouraged me to go to university.”

When public speaker and anti-bullying activist Lizzie Velasquez was 17 years old, she discovered that she had been titled “The World’s Ugliest Women” due to her disability: a rare congenital disease called Marfanoid–progeroid–lipodystrophy syndrome that prevents her from developing body fat.

In this powerful TED Talk she talks about the importance of self-description for everyone and asks: “what defines you?” (closed captions are available for this video).

You can find out more about Lizzie on her Youtube channel.

The power of participation

The User Voice and Participation (UVP) Team believe that the voice of the service user should inform our practice. Our aim is not only to make sure that the voices of young people are heard but also to facilitate participation groups that embody the meaning of participation, as defined by the young people that we work alongside.

This process is ongoing and always will be. Through this process we hope to help young people grow as individuals. We should not just take feedback from young people, but also give back in ways defined by the young people themselves. Examples of this include helping them develop confidence, providing Makaton training or interview skills advice.

“ATLAS has helped me build friends but not just in ATLAS, outside too, as it has given me confidence.”

Previously, ATLAS was called SYAS (SEND Youth Advisors Surrey). Members worked to rename and rebrand the participation group so that it aligns more closely with how they self-describe.

As a group, not only will ATLAS be redefining itself, but the young people will also be creating a report of preferred terminology, due in the summer.

“My disability is fluid.”

Due to recognition of the fact that people identify with different words in different ways, ATLAS have decided to use a traffic light system to indicate whether words should never be used (red), that some people may be okay with some words (amber) and words that are more widely accepted (green).

“I would rather say I have additional needs than say that I’m disabled.”

“Everyone identifies with the word ‘disability’ differently. Some Deaf and Blind people don’t consider being deaf and blind a disability. But for me I am chronically ill so it doesn’t matter where you put me, I’m still in pain all the time. Some disability you might have a better experience, but with my chronic illness I am not gaining, I am only losing.”

Watch this space for more news about ATLAS and how their participation will be changing to be more accessible! In the meantime I will leave you with one last thought from our young people about the language around additional needs and disabilities:

“Honestly a lot of time it’s about asking. It is about how someone self-describes.”

Categories
Mental Health Personal Story SEND

Comorbid Mental Health with Additional Needs and Disabilities

Rowan Foster, one of our ATLAS members, shares her knowledge and experience of comorbid mental health with additional needs and disabilities.

Contents

  1. Introduction
  2. Misdiagnosis
  3. The accessibility of treatment
  4. Chronic physical illness and mental health
  5. Lack of services
  6. Conclusion

Introduction

When someone has additional needs and disabilities, the way they experience the world and consequently the way they experience mental health can be very different, because their brain is wired completely differently – especially in autism. The challenges faced by someone with additional needs and disabilities, living in a world that is not built for them and often works against them, can lead to mental health issues, and in addition to this many mental health conditions are highly comorbid in people with additional needs and disabilities: for example, a study found that seven out of ten people with autism also have a condition like anxiety, depression, or OCD.

In this blog post, I will discuss some of the key issues that young people with comorbid mental health and additional needs and disabilities needs often face.

Misdiagnosis

The way that mental health difficulties can present in young people with additional needs and disabilities needs is highly varied and complex – and as a result, they can be harder to treat. Until you can acknowledge, understand, and meet the needs that a young person with additional needs and disabilities has, it’s tricky to diagnose, understand and treat their mental health difficulties.

Sadly, this isn’t always recognised, and a common result of that is misdiagnosis. Especially when a young person presents with mental health difficulties that need urgent treatment, professionals don’t always have the time or the training to properly take additional needs and disabilities into consideration. But the right diagnosis is crucial to the treatment of any mental health difficulty, because a diagnosis helps a professional decide what treatment needs to be given. Giving the wrong treatment is unproductive at best, and seriously harmful at worst.

For example, some of the misdiagnoses that are given to young people with neurodivergent needs are:

It is important to remember that someone with additional needs and disabilities can still have these mental health difficulties. However, the interaction between a young person’s additional needs and disabilities and their mental health difficulties means that a diagnosis should be made more carefully. To make sure that the right diagnosis is made, there should be professionals involved who are knowledgeable about additional needs and disabilities and how the young person’s additional needs and disabilities affect them must be considered.

A mental health professional I had in the past told me that neurodivergent needs are like a ‘neurological backdrop’ to any mental health problems that show up. It’s like painting on blue vs. red paper. You can put the same paint on the paper, in the same way, but the colour will show up differently.

Professionals can misread the severity of a mental health difficulty because the presentation in a young person with additional needs and disabilities is different to what they expect. With neurodivergent needs in particular, interpreting behaviours and reactions from a purely mental health perspective can lead to misdiagnosis. For example, an autistic meltdown could be misread as a severe mental health crisis, even though it could in fact be relatively easy to manage. If nobody in that young person’s care understands how to do so, they are left untreated.

The accessibility of treatment

Even when a young person is diagnosed correctly, treatments often have different effects on someone with additional needs and disabilities. For example, I have heard repeatedly that many young people with autism struggle with CBT, myself included. This is a therapy that the NHS prescribes for a lot of different mental health difficulties. Nonetheless, the very design of CBT means that it is not suitable for everyone. The best therapeutic approaches are individualised and this is especially true for people with neurodivergent needs.

Many therapeutic settings are not accessible to a young person with additional needs and disabilities, through practical accessibility in some cases and sensory difficulties in others. So even if you manage to get the young person treatment that will work for them, you need to make sure this is treatment they can access. What isn’t always understood about accessibility is that a place isn’t fully accessible if it causes undue stress or difficulty to access it. Even if you cannot see any issues with a young person getting to, from and inside a therapeutic setting, that doesn’t mean they aren’t there.

As a person with limited mobility, for example, there are lots of very small things that impact the accessibility of a place – most of which I never would have even thought of when I had full mobility: heavy doors, small steps, the material a path is made from. When the energy and pain it might take for me to get there and back is considered alongside the design of the environment, the recovery time required after an appointment can negatively impact my everyday life.

It is the multitude of small battles that can hurt the most. This is the same for all types of accessibility need. Consider a young person who is anxious about attending a therapeutic setting on top of having to worry about the accessibility of the building they must enter to access support. It is just another stress that they don’t need, and that could exacerbate their existing additional needs and disabilities and/or mental health difficulties.

Imagine that you have been placed somewhere that is supposed to protect you, however it is uncomfortable and possibly painful for you to be there. You are unable to remove yourself from this situation. How do you feel?

Inpatient facilities are often not accessible as they tend to be bright and/or loud spaces with very little privacy: a sensory nightmare. If a young person is there under a section, they cannot leave. Someone in an inpatient facility for their mental health would have been struggling before they arrived. They shouldn’t have to deal with inaccessibility on top of that.

Physical chronic illness/disability and mental health

It is also worth noting that if a young person has physical difficulties like chronic illnesses or disabilities, the relationship between this and comorbid mental health is often not explored in the right way. Young people are often not believed about symptoms like chronic pain – it is assumed that you’re ‘too young’ or exaggerating to get out of doing something. I’ve heard it said before that everything would be better if mental health was treated like physical health, but I’m of the opinion that this isn’t true. Regardless of if your health issues are physical or mental, if someone can’t see it, they often assume it doesn’t exist.

It can be very difficult to access medical treatment or be believed about physical symptoms if you have mental health difficulties, because medical practitioners will often assume that these are the cause. The early symptoms of my physical chronic illnesses were not recognized or addressed by paediatric health services, because they assumed that they were caused by my mental health issues. If they’d been recognized earlier, that could have prevented or at least mitigated the later decline in my physical health.

I have heard of many cases where people are prescribed psychological therapy in the expectation that this will eliminate a lot of their chronic illness symptoms. Therapy can be beneficial for long-term symptom management as it can help you learn to accept and manage your condition however, it is not a cure and shouldn’t be administered as such.

The stress of dealing with physical chronic illness and disability can cause mental health difficulties by itself, especially in cases where pain is involved. It can be so scary for a young person to have to take responsibility for their own body in that way, and it doesn’t help your self esteem when you can’t participate in the same things that your peers do. If your physical illness or disability sets in later in life, then you might also be grieving for the loss of a healthy body.

Young people with physical chronic illnesses and disabilities need empathy and support – and young people need to be believed and listened to.

Lack of services

There is no service or provision for a young person with SEND needs and mental health issues. Unfortunately, this means that nobody knows what to do when a young person needs support for both simultaneously, and nobody knows who is responsible for them. Young people with these more complex needs often find themselves jumping from service to service. The way that the services are built now means that a young person often finds themselves receiving treatment or support from a multitude of teams – none of whom speak to each other. It is usually left up to the young person and their parents or carers to coordinate their own care.

A holistic approach is key to treatment of many mental health conditions, which the current services fail to do. Mental health services do not understand the additional needs and disabilities, and the additional needs and disabilities either don’t have a service (because almost all additional needs and disabilities services are built for young people with moderate to severe visible + physical disabilities or learning difficulties with lower cognitive functioning) or their service doesn’t fully understand the mental health needs, especially when complex. These services can provide some help, but none of them can fully meet that young person’s needs. The fact that they do not talk to each other compounds the issue. The young person is left with a disorganised, often ineffective, treatment path, and it is difficult for them to know what is happening.

Conclusion

I think we need more integrated and holistic care options to provide for the needs of young people with additional needs and disabilities. We face enough discrimination from the world around us. It is disappointing that we sometimes also face this discrimination from the services that are supposed to help us. I believe that we can do better than that. We must.

I hope this post has been a valuable read for you. Maybe you related to parts of it, or maybe you’ve learnt something new. Even more so, I hope that you remember to treat the young people with additional needs and disabilities in your life with compassion and respect. Especially if that person is you.

ATLAS members chose to self-describe with additional needs and disabilities and therefore this article has been updated to replace SEND with additional needs and disabilities.


Resources

[1]https://www.autismresearchtrust.org/news/borderline-personality-disorder-or-autism

[2]https://pro.psychcentral.com/aspergers-syndrome-vs-ocd-how-to-avoid-misdiagnosis/

[3]https://www.drakeinstitute.com/adhd-vs-anxiety-whats-the-difference

[4]https://socialanxietyinstitute.org/social-anxiety-and-aspergers-differences

[5]https://guilfordjournals.com/doi/abs/10.1521/adhd.2005.13.3.9?journalCode=adhd

[6]https://adhdnews.qbtech.com/odd-a-problem-of-misdiagnosis#

[7] https://network.autism.org.uk/good-practice/case-studies/eating-disorder-or-disordered-eating-eating-patterns-autism