Sunday, May 22, 2016

Five Myths Disabled Patients Desperately Want Debunked

As a young woman battling serious illness, with multiple hidden medical devices, I have found there is a high incident rate of unnecessary, and hurtful comments by those assuming I am not sick. This encounter seems to be a reoccurring experience for many patients battling hidden, or invisible disabilities. After surveying a small population of chronically ill individuals on Instagram, it seems there are five specific stigmas that patients desperately wanted dispelled.

1. Wheel chairs are only for paraplegics. There is a large stigma surrounding wheelchairs and their uses. Many people believe these mobility aids are for patients completely bound to the chair, with an inability to leave it. This is in fact only one use of a wheelchair, and a very narrowed view of its capacity to bring mobility to individuals. Wheel chairs are mobility aids, meaning, anyone needing assistance with mobility can benefit from there use. Whether it be severe fatigue, neuropathy, muscle weakness, joint pain, or a connective tissue disorder making the body unstable, many individuals require the use of mobility aids. These patients might not look ill, and may even be able to walk seemingly normally, however, that doesn't mean they can walk for long distances, walk without causing extreme pain, or walk without damaging their bodies. These patients may use wheelchairs while out shopping, on a vacation with family, or while attending a long event. On good days you may see these individuals without the aided mobility of their chair but, that doesn't mean that tomorrow they wont need it.

2. Disabled parking stalls are only for those with mobility aids. This is a myth that causes so many patients already battling emotional trauma due to serious illness unnecessary distress from cruel comments. The majority of patients prescribed handicap parking stalls have an invisible disability, meaning, you cannot see their ailment. The use of a mobility aid such as a wheel chair, walker, or crutches is only one of the criteria that qualifies an individual for these parking stalls. The Department of Motor Vehicles expresses the qualifications for a placard vary by state but, some of the medical conditions that could cause you to receive a placard are as followed: 


This list, while unspecific, gives great examples of conditions you would be unable to see, but would cause the individual an inability to park at the back of a crowded lot. Cancer, cystic fibrosis, congestive heart failure, pulmonary fibrosis, COPD, and neuromuscular disease are just a few of the conditions that could be incorporated in this list that may not requirre the aid of a visual device, but absolutely would require that the patient has a closer parking spot. Never judge an individual by only what you can see, they may be hiding more than you know. 

3. Service animals are only for the blind, and must wear a vest. As the need for daily assistance has increased due to the high prevalence of serious illness in this country, many individuals have turned to the use of service animals. A service animal is defined under the ADA as, "a dog that has been individual trained to do work, or preform tasks for an individual with a disability." Source: http://www.ada.gov/regs2010/service_animal_qa.html#def 
Today many patients battling illness benefit from the use of a service dog that can alert them of an impending medical situation. Dogs can be trained to specialize in many different areas such as: diabetic alerts, severe allergy alerts, visual assistance, hearing impaired assistance, mobility assistance, psychiatric assistance, seizure alerts, or medication/injection alerts. Pups will undergo years of training in order to properly alert their owners of these conditions, which in turn creates a better quality of life for the patient. While many owns who possess service animal may look completely normal, they are battling disabilities that require assistance they cannot provide themselves. Please keep in mind that you may not be able to tell this animal is on duty if the individual doesn't have a visible disability, especially since there is no ADA requirement that states a service animal must wear any form of distinguishing ID. Always use caution before petting an animal as they may be executing a life saving task. 

4. Handicap restroom stalls are only for those with mobility aids. This is another myth where patients suffering invisible disabilities take the brunt of hurtful comments directed out of ignorance. Handicap restroom stalls, while made large to accommodate those with mobility aids such as wheelchairs and walkers, are not only for that purpose. These large stalls are also to accommodate patients that need extra room to preform tasks such as draining an ostomy bag of fecal matter, voiding a drainage bag of urine, or even releasing stomach acid by a tube fed patient. These stalls are also used by those that need the aid of a bar rail to access the toilet. Though the patient may look like a healthy individual, they may have a medical device hidden under their clothes, or have a disease that caused deteriorating joints. Please be respectful, and null of judgment when someone exits a handicap stall.

5. If you aren't obviously ill you do not have a serious disease. If you have read all the way to number five you have more than likely seen a theme throughout this post; invisible disability is misunderstood. Many ailments, conditions, illnesses, and diseases are often well hidden. While that lovely young woman pulling into the handicap parking stall may look like a flourishing, well put together individual, she could be battling for her life with medical devices hidden right under her clothes; a feeding tube, central line, ostomy bag, and catheter are just out of site. That young gentleman with an adorable furry Labrador may look like he is simply taking a walk with mans best friend, but wait another moment and the dog is now visually disturbed, attempting to alert his owner of an oncoming seizure. The middle aged man walking into the handicap restroom stall may have serious muscle weakness from a degenerative illness causing him to need the hand rails to pull himself up off the toilet, and the beautiful college student using a wheelchair may have lung disease and cannot breathe well enough to make it across campus on foot. Never be quick to judge those around you, as they may be fighting a war within their bodies you simply cannot see. 

11 comments:

  1. Great read Chanel. Spot on observations, and examples. I have a handicap placard, and I feel guilty using it, because most days I don't look sick, but deep down I am dragging my butt. Not having to make the long walk into Safeway's Pharmacy from the faraway parking lot, means I might have the energy to go home and cook dinner, or fold a load of laundry and put it away. Etc. Thank you for bringing attention to these myths. <3

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  2. When some don't operate like they use to

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  3. Thank you for sharing this list! There have been a lot more instances of misunderstood hatred and prejudice towards those with invisible illnesses recently. This is a wonderful way to spread awareness. Another misconception that I have faced is that those with chronic illnesses can choose to get better and it's about your mindset. Unfortunately this comment came from a family member that was only trying to help.

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  4. My name is Nana Marfo age 32 and living in the UK.
    My story began all back in 1983 when I was born 6 month premature and it was realised I had a small airway.
    I needed a way to breath and the only solution at the time was to have a tracheostomy inserted in my airway to enable me to breath and live.
    I was in hospital for a period of 2 years to enable I was strong enough to cope with the outside environment.
    Growing up was a struggle back in the 80s and 90s as no one really knew how to deal with my condition local councils didn't know how to deal with me in the education system and it was really a battle.

    Due to this the council back then made a decision for me to be put in a special school instead of a mainstream one.

    My mother fought with her passion for fair treatment which enabled me to be in a main stream school and be the man I am today.

    After all those barriers I have realised the world hasn't moved on from the uneducated stigma of disability even in the employment environment.

    There is a big stigma and lack of awareness after so many years talking based on personal experience companies make disabled people feel unwanted in the working world and tend to play on a disabled persons illness to constructively dismiss instead of supporting.

    There are alot of legislation but the attitude of people make it impossible to move away from the stigma.

    I Nana Marfo wish to change the world and the uk.

    The worlds insight into disability and attitude must and can change.

    Share:

    "Stigma against Disability"

    https://petition.parliament.uk/petitions/130551

    Regards

    Nana

    "Stop the stigma against Disability

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  5. How do. You deal with the holiday

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  6. Very good post. Thanks for your advocacy.

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  7. Really paid attention to your use of disabled toilets with mobility aids. Just as you say, you can have other health issues that don't involve visible physical disabilities and still be judged as less deserving because your legs aren't openly impaired for everyone to see.

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