Hidden Disabilities, Hidden Needs

HIDDEN DISABILITIES, HIDDEN NEEDS

Not all disabilities are visible. We need to make sure that we aren’t excluding people whose disabilities we can’t see.

I have a friend who is a complete rockstar.  Not only does he work in a stressful corporate environment, socialize like a rocket and find ample time for his children and partner, but he also participates in a very physical and fast-paced sport.  When you hear this description, could you ever imagine that this person is paralyzed from the waist down?  Probably not . . .  Although he is resilient, there are still things that are out of his control that affects his mental and physical wellbeing.  Although my friend’s disability is visible, he suffers from various non-visible side-effects which he tends to hide as much as possible.  He suffers from Anxiety, Depression, phantom pain in his legs, tremors, severe back pain, and constant bowel problems.  Unfortunately, lack of finances does not help his case as he needs additional equipment at home, specialized food to relieve his bowel problems, and additional support when and where it may be required.

In short, “disability” is defined as “to include those who have long-term physical, mental, intellectual, or sensory impairments which in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others”.  A disability is any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being.

VARIOUS TYPES OF DISABILITIES (VISIBLE AND NON-VISIBLE)

We all know those special parking spaces that are designated for disabled people.  How often did you see somebody who appear “normal” park there and gotten angry because they have no right to park there?  Why can’t they park in normal parking areas like the rest of us and walk a few extra meters further to the shops?  What makes THEM so special?  Well surprise, here is a bit of information to sensitize you to their circumstances and conditions.

It is important to note that you should never assume someone does not have a disability.

To have a disability rarely comes with just the presenting disability.  Additional side-effects come into play and those additions often make life more challenging for the person.

In general, people are more accepting of individuals that have visible disabilities.  They can clearly see that the person has a disability that hinders the way they interact with others and their surroundings.  However, individuals that have non-visible disabilities may suffer from bullying and being misunderstood because to the naked eye, they may seem as though they do not have a disability.

Think of somebody that is suffering from social-anxiety.  They might feel crippled when confronted by crowds and only want to rush into the shop, get what they need and get back to the safety of their car before experiencing a meltdown.

Alternatively, there could be somebody who suffers from severe diabetes and might experience side effects such as painful joints, heart complications or lack of energy.

Somebody might be leaning onto their trolley for support, either because they are experiencing pain, breathing problems or might even be clutching to the trolley to keep themselves together from not mentally breaking down.

Below are a few examples of various visible and non-visible disabilities and additional side effects that the person must contend with.

VISIBLE (TO BE DIAGNOSED AND TREATED BY A QUALIFIED MEDICAL PROFESSIONAL)

In these cases, the disabilities are visually recognizable, but additional negative side-effects make the disability more difficult for the person to bear.

Visible Disability:	Possible Additional Complications and Negative Side-Effects:
Dwarfism	°         Delays in motor skills development, such as sitting up, crawling, and walking °         Frequent ear infections and risk of hearing loss °         Bowing of the legs °         Difficulty breathing during sleep (sleep apnea) °         Pressure on the spinal cord at the base of the skull °         Excess fluid around the brain (hydrocephalus) °         Crowded teeth °         Progressive severe hunching or swaying of the back with back pain or problems breathing °         Narrowing of the channel in the lower spine (spinal stenosis), resulting in pressure on the spinal cord and subsequent pain or numbness in the legs °         Arthritis °         Weight gain can further complicate problems with joints and the spine and place pressure on nerves °         Poorly developed organs and their associated complications °         Anxiety for being ridiculed °         Depression °         Low self-esteem
Albinism	°         Eye complications that can impact learning, employment, and inability to drive °         Rapid, involuntary back-and-forth movement of the eyes °         Head movements, such as bobbing or tilting the head, to try to reduce the involuntary eye movements and see better °         Inability of both eyes to stay directed at the same point or to move in unison °         Extreme nearsightedness or farsightedness °         Eye sensitivity to light °         Abnormal development of the retina, resulting in reduced vision °         Poor depth perception °         Highly sensitive to light and sun exposure.  Sunburn is one of the most serious complications – increase risk of developing skin cancer and damage-related thickening of the skin °         Anxiety and they may experience bullying, teasing, probing questions °         Low self-esteem and stress °         Depression as they may feel like outsiders or may be treated like outsiders which may result in reclusive behaviour
Paralysis (temporary, permanent loss of voluntary muscle movement in a body part or region)	°         Numbness, weakness, or pain in affected muscles °         Visible signs of muscle loss          Involuntary spasms or twitches °         Loss of intelligible speech °         Confusion °         Difficulty talking or understanding °         Vision problems in one or both eyes °         Difficulty walking °         Loss of balance and coordination °         Severe headaches °         Fatigue °         Memory loss °         Hallucinations °         Irritability and agitation °         Mood and behaviour changes °         Anxiety °         Depression
Muscular Dystrophy	°         Trouble walking and/or using arms °         Shortening of muscles or tendons around joints °         Breathing problems °         Heart problems °         Swallowing problems °         Anxiety °         Depression
Down Syndrome	°         Heart problems °         Hearing and Vision problems, including cataracts °         Gastrointestinal disorders °         Obesity °         Breathing issues, including sleep apnea and asthma °         Underactive thyroid °         Seizures °         Early-onset dementia °         Depression °         Anger °         Anxiety
Amputations	°         Heart problems °         Deep vein thrombosis °         Slow wound healing and wound infection °         Pneumonia °         Stump and “phantom limb” pain °         Possible pain when using an artificial limb °         Anxiety °         Depression, including the possibility of feeling suicidal °         Denial °         Grief
Physical Disability	°         Overweight and Obesity °         Heart-related problems °         Arthritis or joint inflammation °         Asthma °         Bowel or bladder problems °         Pain °         Pressure sores or ulcers °         Fatigue °         Increase in injury °         Low self-esteem °         Anxiety °         Depression °         Anger issues

As you might have noticed, Anxiety, Depression, and Low Self-Esteem get mentioned as side effects in all the disabilities above.  These can be crippling to the sufferer and make a sufferer withdraw from society and the support that they so desperately require.

NON-VISIBLE (TO BE DIAGNOSED AND TREATED BY A QUALIFIED MENTAL HEALTH PROFESSIONAL)

These disabilities are not visible but are extremely important to take note of.  People with non-visible disabilities are often bullied, judged, cast aside, and ridiculed for not fitting into the “normal” standards of society.

Non-Visible Disability:	Possible Additional Complications and Negative Side-Effects:
Mental Health Conditions: °         Personality Disorders           °         Obsessive-compulsive disorder	°         Difficulty in forming healthy relationships °         Increased withdrawal from socialization °         Unstable emotions and/or Mood swings °         Depression °         Anxiety °         Suicidal thoughts °         Attempted suicide °         Decline in physical health due to lack of care °         Poor coping skills °         May struggle to control impulses or behaviour °         Possible general suspicion of others around them °         Indifferent to social cues °         May show disregard for the rights and feelings of others °         May have difficulty functioning without the aid or encouragement of others °         Increased risk for substance abuse  °         Fear of being contaminated or exposed °         Doubts, especially self-doubt °         Intense stress when objects are not orderly or facing the right way °         Thoughts of possibly acting inappropriately in public °         Avoidance of situations that can trigger obsessions °         Stress °         Anxiety °         Poor quality of life °         Increased risk for substance abuse
Hearing Loss	°         Possible cognitive decline °         Hearing muffling of speech and other sounds °         Difficulty understanding words, especially against background noise or in a crowd, feeling disorientated °         Frequently asking others to speak more slowly, clearly, and loudly °         Needing to turn up the volume of the television or radio °         Withdrawal from conversations °         Lack of focus °         Irritability and/or Anger °         Difficulty maintaining relationships °         Avoidance of some social settings °         Medical devices and operations required which is costly °         Muscle tension °         Anxiety °         Depression
Sensory & Processing Difficulties	°         Oversensitive to things in their environment °         Overwhelmed by people and places °         Common sounds may be painful or overwhelming (sudden noises or bright light) °         Light touch of material may chafe the skin °         Avoids touching people or hugging them °         Be uncoordinated and bump into things °         Unable to tell where their limbs are in space °         Be hard to engage in conversation or play °         Seeks out quiet spots in noisy, crowded environments °         Has a very limited diet of preferred foods °         Gets upset about small changes in routine or environment and avoids trying new things °         Anxiety °         Stress °         Depression °         Irritability
Bipolar	°          Increased chance of having thyroid disease, migraine headaches, heart disease, diabetes,            obesity, and other physical illnesses °          May also suffer from Attention-Deficit Hyperactivity Disorder °          May also suffer from an eating disorder, such as binge eating or bulimia °          Anxiety °          Misuse of drugs and alcohol °          Irritability °          Aggressiveness °          Hopelessness °          Feelings of guilt °          Severe sadness °          Loss of interest in activities normally enjoyed °          Being easily distracted °          Forgetfulness °          Heart palpitations °          Abdominal pain
Cognitive Impairments Dementia Traumatic brain injury Learning disabilities	°         Confusion or appear dazed °         Poor motor coordination °         Loss of short-term or long-term memory °         Identity confusion °         Impaired judgement and struggles with planning and problem-solving °         Language problems such as having trouble coming up with desired words or understanding written or verbal information °         Loses focus and is easily distracted °         May struggle with complex decision-making, but can complete tasks such as taking medication or paying bills °         Muscle twitching, spasms, or seizures °         Stiff or rigid neck °         Abnormal heart rhythm °         Fatigue °         Muscle weakness °         Change in sleep patterns °         Impaired balance and coordination °         Severe headaches °         Anxiety °         Depression
Health Conditions, such as:        Diabetes        Chronic pain or fatigue	°         High blood pressure and cholesterol °         Brain health issues °         Respiratory complications °         Infection of the gums and bone, leading to painful chewing problems and tooth loss °         Erectile dysfunction °         Hearing loss °         Susceptible to skin infections and urinary tract infections °         Obstructive sleep apnea °         Vision problems such as blurred vision °         Kidney problems °         Numbness or mild tingling in hands or feet °         Increased hunger °         Unintended weight loss °         Slow-healing sores °         Areas of darkened skin, usually in the armpits and neck °         Anxiety °         Depression

In most cases, guidance through Therapy is required on how to deal with Anxiety, Depression, Resentment, Anger, and Self-Esteem.

MOST COMMON TYPES OF ANXIETY:

• Generalized Anxiety – long-lasting worries about non-specific life events, objects, and situations
• Social Anxiety – excessive fear of being negatively judged by others in social situations or of public embarrassment
• Health Anxiety – excessive fear about one’s health
• Separation Anxiety – fear of being away from home, a place that provides feelings of security or loved ones
• Obsessive-Compulsive – recurring irrational thoughts that lead you to perform specific, repeated behaviours
• Panic – brief and sudden attack of intense terror and apprehension
• Phobias – excessive fear of a specific object, situation, or activity

COMMON SYMPTOMS OF ANXIETY

Feelings:

Feeling restless or tense                                Sweating and/or Trembling

Breathing rapidly and shallowly                      Having an increased heart rate

Feeling weak or tired, trouble sleeping           Having trouble concentrating

Jumpiness, Dry mouth, Nausea                     Numbness, or tingling

Thoughts:

Thinking there is danger everywhere

Worry too much about bad things happening

Having difficulty controlling worry

Behaviour:

Having the urge to avoid potentially stressful situations

Clinging to safe people and sometimes refusing to leave them

Temper tantrums or outbursts when facing feared situations

Rituals

MOST COMMON TYPES OF DEPRESSION:

• Major Depression – experience symptoms every day for most of the day irrespective of what is happening – lasts weeks or even months
• Persistent Depression – the severity of symptoms that can become less intense before worsening again – lasts for two years or more
• Atypical Depression – depression temporarily goes away while experiencing a positive event but returns after the hype of positive event fade
• Seasonal Depression – related to certain seasons, mostly winter months as it changes your bodily rhythms in response to a decrease in natural light
• Psychotic Depression – losing touch with reality and experiencing delusions and hallucinations, problems sitting still or slowed physical movements
• Secondary Depression – predominantly in individuals who has one or more pre-existing, nonaffective psychiatric disorders or an incapacitating or life-threatening medical illness that precedes and parallels the symptoms of depression
• Peripartum/Postpartum Depression – Peri-(onset within 4 weeks before childbirth). Post-(onset after childbirth).  Hormonal changes that trigger changes in the brain that cause mood swings
• Situational Depression – feelings brought on by specific events or situations such as the death of a loved one, divorce, abuse, financial difficulties, or legal troubles but where the feelings start to feel out of proportion to the triggering event

COMMON SYMPTOMS OF DEPRESSION

Feeling restless or tense

Loss of interest or pleasure

Pessimism and hopelessness

Irritability

Overeating or loss of appetite

Inability to feel joy, even on happy occasions

Insomnia or sleeping too much

Aches, pains, headaches that won’t go away

Suicidal thoughts or attempts

Persistent sad, anxious, or empty feelings

Feelings of worthlessness, guilt, and helplessness

A FEW TIPS ON HOW YOU CAN HELP SOMEBODY WHO IS STRUGGLING WITH MENTAL HEALTH CHALLENGES:

• The first step would be to prepare yourself emotionally. Are you in the right frame of mind and emotionally healthy enough to listen and empathize?  Calm your mind and focus on the person you want to comfort.  Think about what you want to say.  By calming yourself, you will be able to demonstrate honest empathy through understanding their perspective of the circumstances that they find themselves in.  Find the calmness in yourself to be able to speak clearly and calmly.

• Decide when to talk to the person you are concerned about. Are you going to react immediately or are you going to allow this person time to calm and compose themselves?  Will the time be convenient and appropriate for both of you?  Should you see that other people are already consoling the person, you might want to stand back and choose a more private time to talk to find out if there is anything that you can do.  Please also give attention to the environment that you choose for the conversation.  It might be more appropriate to ask the person to accompany you to a more private area (committee room, office, or a quiet place in the garden), or it may be that both of you might feel safer in a public area, like a restaurant or a bench in a park.

• A bit of humour can go a long way. Humour can alleviate moods quickly.  Even if you must make a joke about how silly and unsure you felt and had a whole ridiculous conversation in your head before finally leaping to talk to the person in distress.  It is okay to be a bit silly and humble at times.  Remember, the focus is not on you, it is on the other person and all you are trying to do is allow them the opportunity to focus on your silliness and not their problems.  Who knows, you might be fortunate enough to see a slight smile between the tears and fears.

• Ask open questions that encourage detailed responses. Explore the underlying cause of the distress that this person is experiencing but be tactful.  If the person feels uncomfortable, do not push the issue.  The person will share when he/she is ready.  It takes a lot of trust to open up to somebody.  When you are actively listening, in a non-judgemental manner, the trust will start to build purely on the basis that you are displaying respect to the feelings of this person.  Remember not to interrupt.  Give the person enough freedom to express what they are feeling and experiencing.

• Be genuine and compassionate when dealing with somebody in distress. Treat them with respect and dignity.  Be clear, open, and honest.  It will not serve the person any good if you try to sugar-coat the situation, it can cause the distressed person to feel belittled.  Keep a check on your attitude and make sure that the message that you want to convey is clear and concise.  Another thing that we need to remember is that not everybody likes hugging and personal contact, it might cause further distress.  Ask permission before you hug and respect the personal space of the distressed person.

• People are often too proud or scared to ask for help. If you know what the underlying cause is, then you can suggest avenues of support, whether it is counselling from a manager, a minister, an employee assistance programme, or a therapist.

• If possible, meet an immediate need of the person to alleviate distress. Supply a blanket, appropriate/safe medication, a cup of tea, or ask them to do a deep breathing exercise with you.  Make sure that the person is safe and offer support as needed.

• Together you can even work towards finding solutions. The goal is not to fix the problems for the other person, but to suggest avenues on how he/she can healthily manage emotions.  Suggest practical ways to move forward.  Look at similar tasks or events that the person overcame or completed in the past.  The skills that were successfully used in the past could be used in these new events to help solve or alleviate the problem.

• Try not to get too involved. I must reiterate that your goal is not to fix the problems of the other person.  Do not sacrifice yourself if your own time, capacity, capability, or patience are limited – know your limits.  You can only listen, give advice, and think about the situation so much.  You can feel dragged down and overloaded and if you are not careful, it can drive a wedge between you and the person that you are trying to help.

• When appropriate, focus on the positive. Help the person to find positives in the situation, but please be sensitive when applying this technique.  If the situation is truly bad, it can be counterproductive to point out the positives.

• Implement routine and structure where possible. This serves as a type of “security blanket”.  The predictable daily routines will serve a role of comfort and protection.

• Acknowledge their efforts, but do not patronize them. Validation and acknowledgement can tremendously lift their mood.

• Check-In frequently and listen attentively to what they are saying to you without interrupting them. Get the message across that you are there to help and support them, without judgement.

• Lastly, set boundaries. Let the person know what you can and cannot do.  If you feel that the person is in danger to themselves or others, you have the responsibility to report it to the necessary authorities or institutions.  When the person verbally attacks you, you will not be able to help the way that you really want to.  Try to say something like “Can you please try to lower your voice?” or “I am unable to continue to listen to you because you are swearing and shouting at me.  Feel free to come and talk to me again in a calm manner, without swearing and I will be happy to listen and help then.”.  Remember, you are not responsible for the situation or for saving somebody, all you can do is try as much as you can and be there for somebody in need.

PEOPLE WITH DISABILITIES ARE DIFFERENTLY ABLED, BUT ABLED NEVERTHELESS

People often view people with disabilities and only see their challenges, and not their abilities.  Unfortunately, these negative stereotypes over-shadow society’s ability to focus on the capabilities of the person that has a disability.

We all have some skills while lacking in others and therefore, we learn how to play to our strengths.  Each body has the potential to do most things within its capabilities.  I strongly believe that with the right support, opportunities, self-representation, and appropriate resources, people with disabilities can reach their possessed potential by its position.

REASONABLE ACCOMMODATION FOR PEOPLE WITH DISABILITIES

Reasonable accommodation refers to necessary and appropriate modification and adjustments, as well as assistive devices and technology, not imposing a situation, where needed in a particular case, to ensure persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms. (NATIONAL STRATEGIC FRAMEWORK ON REASONABLE ACCOMMODATION FOR PERSONS WITH DISABILITIES – RSA)

Do not expect people to disclose or prove their invisible illness or disability.  Disclosure of disability is a voluntary notification by persons with disabilities.  Disclosure of disability must be linked to disclosure of reasonable accommodation requirements to facilitate a seamless management system within their respective work and personal environments.

Many people, in particular non-visible disabilities, however, do not want to disclose their disability, especially if there is a culture of bullying and disrespect within a service, learning, or work environment.  This is particularly true in situations where abuse is common.

People have reported feeling stigmatized by strangers, colleagues, friends, and family when they have disclosed their conditions.  Comments that get frustrating or are downright rude generate a discomfort that some would rather just avoid, thus causing isolation and reclusiveness.

Reasonable accommodation as a legal entitlement is best defined in the Employment Equity Act, which defines reasonable accommodation as “any modification or adjustment to a job or to the working environment that will enable a person from a designated group to have access to or participate or advance in employment”.  This implies that reasonable accommodation applies to all persons, regardless of disability, in function of the general principle of non-discrimination. Thus, reasonable accommodation must be provided to ensure equal opportunities on account of not only disability but other grounds for discrimination.

FROM THE EMPLOYER:

To determine what is reasonable, an employer must look at the request made by the employee with a disability.  Whether or not an accommodation is reasonable will vary according to the position the employee holds, the way their disability affects their ability to do their work, and the environment that they work in.

The following accommodations are generally considered reasonable for the Employer:

• Make employees feel comfortable to disclose their disabilities
• Offer services and support for people with disabilities (make sure mental health coverage is included)
• Change job tasks – reorganization of the job or reassignment to a vacant position that the person with a disability is qualified for
• Provide reserved and accessible parking
• Improve accessibility in a work area such as ramps (step-free access)
• Improve accessibility to disability-friendly areas (bathroom, kitchen, meeting rooms, and conference facilities)
• Change the presentation of tests and training materials
• Provide training on disability-related issues to all personnel
• Provide information or feedback in writing, rather than verbally, for an employee who communicates better through written materials
• Provide or adjust a product, equipment, or software to allow the employee to correctly enter and read information and handle equipment safely
• Allow a flexible work schedule
• Provide an aid or a service to increase access
• Provide reasonably required office furniture (orthopaedic chair for chronic back problems)
• Reasonably change office policy to welcome the employee’s service animal
• Be as direct as you can with any instructions
• Include graphics and alternative text to the graphics
• Allow access to equal opportunity, integration, and self-representation
• Foster an attitude that is healthy, open, and non-stereotypical within the work environment

FROM YOU AS AN INDIVIDUAL:

If someone shares their disability with you, consider yourself privileged.  Reply without judgement.  If you know the person well, you can show them that you are open to a conversation, but do not push the subject if the person is not ready to share or discuss their disability.

Be mindful about what you do and what you say to everyone, you never know how a kind word can change a person’s day for the better.  Do not make a big deal out of the disability (visible or non-visible) or cause a scene about the person’s disability.  Their disability should not become part of the grapevine and gossip column.  Believe people when they tell you about their pain and check what they need from you and what you can do to help them in their time of need.

Take notice and care of where objects are placed and thrown.  Often these objects become obstacles, not only for those who are physically disabled but could also cause distress and anxiety to those who are suffering from non-visible disabilities.

Avoid asking personal questions about someone’s disability.  Be considerate of the extra time it might take for a person with a disability to do or say something.  Be polite and patient when offering assistance and wait until your offer is accepted.  Listen or ask for specific instructions if you are not sure of what is expected of you.  Be prepared for your offer to be refused.  Relax, anyone can make mistakes and take the opportunity to learn more about the disability and what is expected of you.  Offer an apology if you feel you have caused embarrassment and keep a sense of humour, most people with disabilities do and are willing to communicate

It is important to note that you should never assume someone does or does not have a disability, as it can be indistinguishable.  Remember to be patient, treat others with kindness, and stand up for others when they may need your help or when you notice bullying.

RIGHTS AND RESPONSIBILITIES OF PEOPLE WITH DISABILITIES

People with disabilities should start at the very basic point of understanding their disability, being able to talk about themselves and their disabilities, being able to identify their needs and being able to identify barriers that they face as people with disabilities.  It is the person who has the disability’s responsibility to attain self-awareness to achieve their potential and to work with the non-disabled community to make appropriate enabling resources available.

Persons with disabilities experience a number of interrelated challenges in accessing their rights, which include social barriers such as lack of awareness on the different types of disabilities amongst society, which results in lack of acceptance of persons with disabilities within communities; negative attitudes resulting from ignorance, misunderstanding, and prejudice which keeps society from appreciating and experiencing the full potential persons with disabilities can achieve.  Psychological barriers are mainly informed by fears for their personal safety; and structural barriers such as accessibility to facilities and infrastructure, the lack of support services or technology, the lack of availability of information in accessible formats and the lack of reasonable accommodation in workplaces.

The Constitution of the Republic of South Africa, 1996 protects the rights of all people in South Africa.  Human rights are applicable to all people, therefore everyone in the country is entitled to human rights by virtue of being human.  Section 9 of the Constitution provides that everyone is equal before the law and has equal protection and benefit of the law.  No person, including the State and private companies, may unfairly discriminate directly or indirectly on one or more grounds against any person on one or more grounds including race, gender, colour, age or disability.  Section 10 of the Constitution further provides that everyone has the right to have their dignity respected and protected.

Section 9 of the Constitution states that:

“The state may not unfairly discriminate directly or indirectly against anyone on one or more grounds, including; race, gender, sex, pregnancy, marital status, ethnic or social religion, colour, sexual orientation, age, disability, religion, conscience, believe, culture language and birth’’.

Please search for the WHITE PAPER ON THE RIGHTS OF PERSONS WITH DISABILITIES to read more.

Here is a very special quote to close things off “This work is not for yourself, kill that spirit of self and do not live above your people but live with them and if you can rise, bring someone with you.” as said by Charlotte Mannya-Maxeke.

For any assistance, please contact me directly via my cell phone (073 504 3546) or email (info@gemtherapy.co.za).  In-person as well as on-line sessions are available to individuals, couples and families.  Feedback and suggestions on my blogs are always welcome and if you have a topic that you wish for me to discuss, please do not hesitate to let me know.