The WHO describes disability as a term that refers to an enormous spectrum of impairments, activity limitations and participation restrictions. All of us are aware of the challenges disabled people face in on a regular basis life be it physically, emotionally or mentally however the role of a caregiver is equally difficult and takes loads of effort and responsibility and while the role of a caregiver is often eclipsed, caregiving is learnt through trial and error.

In an interview with HT Lifestyle, Dr Sahir Jamati, Consultant Psychologist and Psychotherapist at Masina Hospital in Mumbai, suggested, “The very best thing a caregiver can do is to contribute to positive change and to empower all and sundry living with disability to embrace his old self identity. A caregiver needs to be empathetic, it is necessary to consider that individuals living with the incapacity are similar to us; they’ve their very own individuality and so they have the identical emotions, interest just as we do.”

Asserting that a disabled person doesn’t wish to be defined by their disability but by who they’re as an individual, Dr Sahir Jamati said, “Addressing or behaving in a different way with them could actually be a turn off for them. As a substitute of framing preconceived judgements, it’s all the time a greater notion to ask them for his or her needs directly; this instils a sense of confidence and importance in them, making them feel heard and understood leaves them feeling positive. All of us wish to be heard; lending a ear to them provides them comfort and relieved. Practice energetic listening. Living an independent life is crucial for nearly everyone and for people living with disability is essential to empower them with independence; that could possibly be achieved by allowing them to make their very own decisions in life.”

Talking in regards to the protocols to be followed by the caregiver while in case of emergency, he said, “Individuals with disabilities are more likely to experience medical emergencies, that’s why it’s all the time clever to be prepared and set a plan prematurely before the emergency occurs. All of us have heard the phrase “prevention is best than cure “Preparing prematurely for the potential of a medical emergency is as necessary because the response through the same incident.”

Planning for an emergency needs to be a priority for caregivers. Based on Dr Sahir Jamati, the next suggestions could help them in times of emergency –

• The emergency backpacks: The bag should include basic clothing, toiletries, phone charger and money for a minimum of 72 hours. The bag needs to be kept in a secure but easily accessible place. Let trusted ones know where this bag will be accessed in case of emergency.
• Emergency contact list: This list of contacts should include the variety of doctors, emergency services like hospital ambulance and likewise close relatives and friends who must be notified in case of an emergency.
• Financial arrangement and emergency: One must put aside a relevant sum of money in times of emergency; the quantity needs to be put aside and used just for an emergency situation and no other splurges.
• Self-care: Don’t panic. One thing about fear is that it leaves us with a mind fog. We’re unable to think clearly; though it’s instinctive that we’d worry about our family members but don’t let that fear freeze you to a level where you can’t rationally take decisions. Also caring for yourself is the very first thing to do; lack of which you’ll wobble on the road to caregiving.

Highlighting the importance of communication with the disabled individuals, he insisited, “Communication strengthens the bond between you and the person on the receiving end of it. Sometimes it gets difficult for care givers to effectively communicate. The disabled person could possibly be physically impaired or could have cognitive disability or simply tough to get along. It’s completely alright in case your communication skills aren’t on top of things, communicating thankfully it’s a skill that will be learnt. It is necessary to reply and communicate positively towards the disabled. Using positive language, being aware and likewise careful with the words to make use of around individuals with special needs. Also, one must avoid displaying nervousness and anxiousness; one must loosen up and do their best to treat them similar to everyone else.”

He added, “For physically impaired people it’s good to tell them if you end up approaching and leaving and likewise to get their attention before one speaks. One must make eye contact and keep the conversation clear and sentences short. A caregiver’s negligent attitude be it conscious or unconscious will be the best barrier to effective communication with the disabled. The caregiver should treat the disabled individuals with common courtesy and respect and recognize the necessity to take care of the dignity like how they treat everyone else.”

Talking in regards to the need for education and addressing prejudice, Dr Sahir Jamati said, “Disabled people face one thing in common prejudice and discrimination. Disable persons are victims to harassment bullying and likewise injustice. The rights of individuals with disability act have been in place in India since 2016. The brand new law protects disable people from above mentioned types of prejudice and discrimination. It is extremely essential to show our youngsters, family and folks around us to not look down upon individuals with disability and provides them their equal right which they deserve like everyone else. The concept that a disabled person is just not incomplete needs to be instilled within the minds of our generation right from the start; it’s just one step towards refraining our society from injustice.”

He revealed, “Disabled people could possibly be under the brink of the sensation of dependence. A disabled person without education is sort of a soldier without weapons. Need for education is mandatory for each disabled person. It instils a way of confidence and feeling of independence; it is crucial for the expansion and development and likewise saves them from loads of prejudices and discrimination.” Pointing on the difference between coping with visible and invisible disabilities, he said, “You might be a food market, the person behind you is disabled, you realize it because he’s on a wheelchair, illnesses whose symptoms you possibly can see, hear or feel are categorized into visible disabilities. Disabilities like mental health conditions, learning disabilities, diabetes, hearing difficulties are categorized into invisible disabilities. The symptoms aren’t immediately evident to others, so along with their internal suffering, additionally they endure the anguish of getting to prove they’ve a legitimate medical condition every day. Invisible illnesses are real, and plenty of that suffer from a chronic condition, have ways to manage.”

For any care giver, Dr Sahir Jamati advised, “It’s necessary to learn in regards to the disability of the person; discover in regards to the symptoms, the treatments, the unintended effects which may be attributable to those treatments, and the sorts of limitations that individuals who live with that disability have. Having little knowledge could possibly be a dangerous thing. As a caregiver one needs to grasp that not all the time the disabled person will ask for help. As a caregiver one must learn to respect the privacy and space of the disabled person. Individuals with invisible disabilities sometimes feel safer not speaking up, even when it means more challenges for them. And like anyone else, sometimes individuals with the invisible disability simply wish to keep their medical information private and never discuss it with strangers. They know best after they feel comfortable and secure speaking up and after they feel more comfortable and safer keeping quiet, so it’s as much as you to respect their decisions. Regardless of visible or invisible disability, one must learn to be non-judgmental, empathetic and understanding towards them.”

Based on Mehezabin Dordi, Clinical Psychologist, Rehabilitation and Sports Medicine at Sir HN Reliance Foundation Hospital, disability is a broad and a multidimensional concept involving the interaction between a health condition, the environment and private aspects. She said, “There may be a powerful connection between disability and mental health. The Centers for Disease Control and Prevention (CDC) found that adults with disabilities report experiencing more mental distress than those without disabilities.” For caregivers, she advised –

• Learn: Gather details about your member of the family’s condition, and discuss issues with others involved within the care of your member of the family. Being informed will enable you to make more knowledgeable health decisions and improve your understanding about any challenges your loved ones might face.
• Be an advocate: Be an advocate in your member of the family with a disability. Caregivers who’re effective advocates could also be more successful at recovering service.
• Suggest activities that nourish their mind and body: There are several activities that will be included. They’ve physical, mental, and emotional advantages. These activities will be adaptable to the person’s needs and talents, and may include leisure and respiratory techniques, meditation, stretching, yoga, and even swimming. Including these activities within the routine can bring significant advantages and simply adapt to all sorts of individuals, ages, and talents. These activities will be practised alone or in groups.
• Do more of what makes them comfortable: Physical and social activity helps improve independence and a way of empowerment. Some things you possibly can suggest to the one you love with a disability to enhance their mental wellbeing include volunteering, developing a recent hobby, or adopting a pet. A recent hobby also can have a therapeutic effect and help with socialisation, opening the mind and exploring recent parts of their personality. Ultimately, it’s about finding activities that make their life fulfilling and satisfying.
• Encourage open dialog: don’t assume that you realize every little thing in regards to the needs of the one you love. Have a dialog and permit them to precise themselves openly and freely. Listen and be compassionate, not judgmental.
• Help them connect with others: Social isolation is common in people living with disabilities and is principally attributable to lack of access, social exclusion, and social comparison. Isolation is an unhealthy habit, and is usually results in additional mental health challenges.
• Discover a support system/community: One other necessary motion is to seek out a community. Connecting with other people is crucial, and any type of social connection shall be useful. Support groups are an incredible possibility as they may meet recent people in similar situations. That is among the best ways to combat loneliness and isolation, as they may take part in a gaggle of individuals facing similar challenges, which can help them feel less alone. As well as, meeting other people in similar situations will help them learn more about living with their condition and provides them a secure place to share their struggles.
• Be empowering: It is necessary that you simply give attention to what you and your member of the family with a disability can do and find avenues to rejoice those milestones. It’s crucial to advertise their sense of autonomy. When appropriate, teach your member of the family with a disability to be as independent and self-assured as possible.
• Seek skilled help: Often, individuals with disabilities receive treatment for his or her physical disability, but their emotional or spiritual needs aren’t addressed. Although Friends, relations, and caregivers of an individual with a disability are the primary line of defence from depression and other mental health conditions- additionally it is necessary to hunt skilled help. Discover where and the right way to get mental health treatment and other support services and resources, including counselling or therapy.
• Maintain yourself: Caring for a member of the family with a disability can wear out even the strongest caregiver. Stay healthy for yourself and people you look after.

Adding to the list of protocols to be followed by the caregiver while in case of emergency, Clinical Psychologist Mehezabin Dordi said, “It is necessary that individuals with disabilities and their caregivers make plans to guard themselves within the event of an emergency or any disaster. Emergencies and disasters can strike quickly and all at once and it requires prior attention and preparedness to give you the option to take care of them in an efficient manner. It’s very easy to panic during an emergency; being mentally and physically prepared may help to attenuate that feeling of panic and enable you to maintain cool, calm, collected, and most significantly, secure.”

She added, “All too often bad situations are made worse when individuals are sick prepared for the bad things that may occur, whether that’s at home or outside. Keeping calm and knowing the right way to reply to an emergency may save the lifetime of those around you. Having an emergency plan in place is crucial. It might be a document that pasted over probably the most obvious areas just like the refrigerator. The plan needs to be kept up-to-date with emergency contacts, present medications, present health conditions etc. additionally it is necessary to ascertain for added help and resources available in nearby medical facilities and in your area.”