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Niet alle beperkingen zijn zichtbaar; sommige zijn verborgen en niet direct herkenbaar, zoals leermoeilijkheden, geestelijke gezondheidsproblemen en mobiliteits-, spraak-, visuele of gehoorstoornissen. Het dagelijks leven met een verborgen beperking kan voor veel mensen veeleisend zijn, maar het kan voor anderen moeilijk zijn om de uitdagingen waarmee je wordt geconfronteerd te herkennen, erkennen of begrijpen.

Wees zichtbaar wanneer jij dat wilt

Het dragen van de Hidden Disabilities Sunflower wijst mensen in je omgeving (waaronder personeel, collega's en zorgverleners) er discreet op dat je misschien extra steun, hulp of wat meer tijd nodig hebt.

Inzichten

  • An image of Amanda. Text reads: the Sunflower Stories Bowl Cancer, LARS syndrome and stoma with Amanda Strother
    Sunflower Stories with Amanda Strother

    The Sunflower Stories - Bowl cancer, LARS syndrome and stoma with Amanda Strother Amanda was diagnosed with bowel cancer at 31 years old. After a successful operation to remove the cancer she developed major LARS which meant that not only was she in pain, she also needed to use the toilet between 30 to 40 times a day.

    Eventually Amanda elected to undergo further surgery to have a colostomy bag and refers to this as the best decision she ever made. She has named her stoma Hope. In the conversation Amanda is brilliantly honest and open, we talk about how the stoma works, what it looks like, what she can do, and other people’s perceptions.

    Amanda is on a mission to educate and raise awareness of stomas.

    If you are experiencing problems discussed in this podcast contact your GP. For support contact C

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  • If not now, when?
    World Diabetes Day

    World Diabetes Day started in 1991 in response to growing concern about the escalating health threat posed by diabetes. It is marked every year on 14 November, the birthday of Sir Frederick Banting, who co-discovered insulin, which is used to treat type 1 diabetes, along with Charles Best in 1922.

    Diabetes is a serious, debilitating, potentially life-threatening, non-communicable disease that can impose a heavy burden on the 463 million diabetics and their families, as well as on healthcare systems and national economies. This is particularly the case in developing countries, home to almost four in five of all people currently living with diabetes.

    Access to Diabetes Care – If Not Now, When?

    Approximately half of people estimated to be living with diabetes remain undiagnosed. Left untreated with insulin, type 1 diabetes is fatal.

    When people with type 2 diabetes go untreated, or are not sufficiently supported, they are at risk of serious and life-threatening complications such as: heart attack, stroke, kidney failure, blindness and lower-limb amputation. Many will be diagnosed with type 2 diabetes because they seek medical attention for a significant pre-existing condition, unaware that the problem will have been caused by diabetes. Some will be misdiagnosed. Tragically and avoidably, some will be diagnosed post-mortem.

    In many cases, if type 2 diabetes is detected early, the risk of developing other serious health problems can be prevented, or at least delayed.

    More must be done to prevent people at high risk of type 2 diabetes, developing the condition. And greater effort must be made to diagnose all forms of diabetes early, to prevent complications. Action to address the diabetes pandemic should include access to affordable and uninterrupted care for every person living with diabetes, regardless of where they live or their economic circumstances.

    ''Make ALL DIABETIC EQUIPMENT AND OTHER THINGS RELATING TO THIS ILLNESS FREE: LANCETS, STRIPS, PENS, NEEDLES, ALCOHOL SWABS. ALL FREE.” Devin Taylor, Sunflower wearer.

    ACCESS TO DIABETES CARE

    A century after its discovery, insulin and other fundamental components of diabetes treatment remain beyond the reach of millions of people with diabetes across the world. People with diabetes require ongoing care and support to manage their condition and avoid complications.

    Fundamental components of diabetes care include:

    • Access to insulin: 100 years after its discovery, millions of people with diabetes cannot access the insulin they need.
    • Access to oral medicines: Many people with diabetes need oral medicines to manage their condition. These remain unavailable, or unaffordable, in many low- and middle-income countries.
    • Access to self-monitoring: Blood glucose monitoring is a fundamental component of diabetes care. Many people with diabetes do not have access to the equipment and supplies they need.
    • Access to education and psychological support: People living with diabetes need ongoing education to manage their condition. Many do not have access to diabetes education.
    • Access to healthy food and a safe place to exercise: People living with or at risk of diabetes need access to healthy food and a place to exercise. Both are fundamental components of diabetes care and prevention.

    The centenary of the discovery of insulin presents a unique opportunity to bring about meaningful change for the 460 million people living with diabetes and the millions more at risk.

    How you can help

    “Have more understanding of the condition and the long term health effects it can have. Understanding of the highs and lows of blood sugars and the effect it can have on the person. Rather than keep saying 'you shouldn't be eating that'. The diabetic person are their own expert of how to manage their condition.”  Diana Atkinson, Sunflower wearer.

    Visit the International Diabetes Federation World Diabetes Day website to find out more about this topic, including ways that you can get involved and help bring about change.

    https://worlddiabetesday.org/get-involved

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  • An animated office scene. Three characters are at work. One sits at a desk and wears the Sunflower.
    Hidden at work

    If someone uses a wheelchair, is an amputee, or carries a cane, it can be easier to understand the barriers they might face and how to support them at work. For those with invisible impairments and conditions, such as mental health conditions, chronic pain, sight loss or autism, it’s often a different story. Colleagues may not spot the challenges they are experiencing, and may find it hard to comprehend, or believe someone, with a “hidden” impairment genuinely needs help.

    Millions of people work with invisible disabilities they rarely talk about. Here we look at some of the reasons why, in the current day and age, many people still do not feel comfortable sharing their disability with their place of work. And how employers must start to change this narrative.

    Perception, the wrong perception?

    There is a perception that having an invisible disability impacts your chances of being hired, keeping a job or being promoted. It’s often easier for someone to hide, or mask their condition, than to let on that they may need their disability to be taken into consideration, would like some simple understanding and empathy or adjustments made to their working patterns or environment. One wearer told us:

    “I was once given a verbal warning about my autistic traits. When I declared that I had autism and that the behaviour disciplined was due to my autistic traits (as confirmed by my university advisor), my employer did not remove the warning and it remained until the 6 months lapsed. I ended up leaving the company due to stress and anxiety because of this incident. Furthermore, since declaring autism on job applications, I have either been unsuccessful in gaining an interview or have failed the interview. Whereas before, when I didn't declare autism, I had interviews for nearly every job I applied for... Now I struggle to even get an interview, I consider hiding my autism but I feel like I would be lying to my potential employer if I did that.”

    Fear

    “There is a strong fear of disclosure in relation to stigma, bullying and condescending behaviour appearing as a result.”

    This overriding fear of other people's reaction to a person having an invisible disability or illness is sadly, something we heard a lot during the research for this article:

    “Staff bully me in every job I've ever had. This frightens me when I go to work the next day.”

    Back in April 2021, we conducted an autism employment survey. Only 44% of our survey respondents had told their colleagues about their autism. This was in the main because of a fear of workplace bullying. 66% of the same survey felt judged at work as a result of their autism, with over half admitting to having experienced verbal abuse at work for being autistic.

    “The reaction of my employer when I was diagnosed with autism and shared this with them was, firstly, to try to deny my diagnosis through Occupational Health meetings and then to raise spurious disciplinary proceedings against me, for not following instructions properly. It took four years of fighting through the grievance procedures (with very poor union support or understanding) before I received a formal apology and agreed accommodations for my disability were put in place. Even after that, and despite the fact that I have asked my employer to keep my disability confidential, and despite being told by my managers that my work is well above average, I still have colleagues who tell people that I use my disability to avoid doing my work properly.”

    In addition to a fear of colleagues knowing about someone’s non-visible disability, the fear of losing your job is also present. Alongside fears of being treated differently and the employer telling other people.

    “I don't want to be a burden”

    In the UK, disability is covered by the 2010 Equality Act, which ensures various protections, and requires employers to make “reasonable adjustments” in order to remove barriers to work. This might mean adapting work hours so the employee can avoid rush hour, or allowing leave for medical appointments.

    Our autism employment survey revealed that despite 63% of respondents having told their employer about their autism, only 34% of employers had made any reasonable adjustments, even though this is a legal requirement. One could argue that if reasonable adjustments are not being made, what's the benefit in sharing your condition with your employer?

    The world undertook the biggest reasonable adjustment overnight when COVID-19 hit – moving people to home working. This has been of huge benefit to disabled people. As sited in our survey, the most common reasonable adjustment that has been made for our autistic wearers is flexible working. So, do we consider this a bid to remove barriers to employment for an autistic person, or simply a natural result of the pandemic, that everyone is benefiting from?

    Some employers did, however, go further, making adjustments to the working environment by providing ear defenders, a quiet desk, or low-level lighting as well as holding more frequent meetings with their employee. These are easy adjustments for an employer to make, that have a profound effect on how an autistic person's day plays out.

    “For a long time, I didn’t know I was autistic and couldn’t understand why I found office life so much harder than everyone else. Now I see how many simple accommodations could have made my experience better and avoided the bullying I have experienced from co-workers.”

    Lack of understanding and empathy

    Despite 63% of respondents to our autism employment survey, having told their employer about their autism, almost 50% of respondents felt that their employer did not understand the challenges that they face at work – and a further 20% were neutral on this question.

    If you don't feel like your employer understands or empathises with you, what's the benefit in sharing your condition with them?

    “I shared the information about my brain injury at work back in 2014 and am now stuck in a weird position of not being allowed back in because of my aphasia. While yes, aphasia isn't perfect, there are so many tools to help with reading, writing and even talking if needed. It's easier for companies to remove their employees who have disabilities rather than realise that they still have multiple skills behind the visible things that they can see. Let's hope that disabilities soon catch up with some of the other discriminated against, minority groups that have recently moved forward.”

    There is clearly more that employers could be doing in terms of empathy, awareness and understanding.

    Some employers are getting it right

    “My name is Alison. I am profoundly Deaf and a British Sign Language (BSL) user.

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  • A picture of Lotte
    The Sunflower Stories - Lotte Vertelt

    In de serie Sunflower Stories dit keer het verhaal van Lotte. Zij is 15 jaar en doof. Ze vertelt ons over haar doofheid en het gebruik van een cochleaimplantater.

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  • Illustration of two characters in gym lifting weights
    Crohn’s Disease

    Crohn's Disease is an inflammatory bowel disease that causes inflammation of any part of the gastrointestinal tract (GI tract). It causes ulceration and inflammation, which affects the body’s ability to digest food, absorb nutrients and eliminate waste. It is a life-long condition with periods of good health and times when symptoms are more active. It is different for everyone with many people experiencing just a few flare-ups, while for others, it is a more severe disease. 

    Crohn’s Disease belongs to a group of conditions known as inflammatory bowel diseases, or IBD, the other being Ulcerative Colitis. It is named after Dr. Burrill B. Crohn, who first described the disease in 1932.

    The content on this page is provided solely for information purposes. If you think that you. or someone you care for, has Crohn's, please seek further information.


    Look out for these Sunflower icons


    • I have accessibility needs Please ask me what they are
    • I may need urgent access to the closest toilet facility Please assist me without questioning
    • I may need more time
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  • Epilepsy
    Epilepsy

    Epilepsy is a condition that affects the brain and nervous system and means that someone has a tendency to have seizures. Epilepsy can start at any age and there are many different types. It is often a life-long condition but for some, epilepsy lasts for a limited time and they stop having seizures.

    Epileptic seizures are caused by a disturbance in the electrical activity of the brain and the causes and effects vary. During a seizure, some people will remain alert and aware of what’s going on around them, others may lose awareness, and some people may go stiff, fall to the floor if they are standing and jerk.

    The content on this page is provided solely for information purposes. If you think that you. or someone you care for, has epilepsy, please seek further information.

    Source:

    NHS: https://www.nhs.uk/conditions/epilepsy/

    Epilepsy Action: https://www.epilepsy.org.uk/ 

    TUC:  https://www.tuc.org.uk/


    Look out for these Sunflower icons

    • I may need more time Please be patient and keep calm - I may need more time to complete an action or to communicate with you
    • I need a quiet/safe place Is there a safe/quiet space I can use?
    • I am sensitive to light Is t

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