Adjusting to a Disability: What to Expect and How to Help

In the U.S., the Centers for Disease Control and Prevention (CDC) reports that over 60 million adults live with a disability. Worldwide, the World Health Organization (WHO) estimates that one out of every six people suffers a disability. If your loved one were to be affected, would you be prepared to assist them in their time of need? What should you expect, and how can you help your friend or family member?

Key takeaways:
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    Caring for the disabled requires patience, perseverance, and an understanding of the disability and the person’s needs.
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    Over 60 million Americans have a disability.
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    Obesity, smoking, heart disease, diabetes, and mental illnesses are common in the disabled population.
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    Many resources are available to help those providing care for disabled loved ones.

You will need to be prepared to assist them in many ways, including providing emotional support, physical assistance, medical care, or ensuring access to care. You may need to assist in activities of daily living or be a shoulder to lean on.

America's disabled population 2022

The CDC reports that over 60 million American adults live with a disability, representing one in four people, or 26% of the population. The largest percentage of Americans with disabilities reside in the southern U.S.

Types of disabilities

According to the CDC, disabilities can fall into several categories.

  • Mobility challenges. Issues with walking, climbing stairs.
  • Cognition. Issues with concentration, memory, decision making.
  • Independent living. Ability to do daily chores, errands, and more without assistance.
  • Hearing. Complete or partial lack of hearing (deafness).
  • Vision. Blindness or significant decrease in seeing abilities.
  • Self-care. Ability to bathe, dress, or do other self-grooming activities.

Disabilities can affect one’s ability to think, move around, see, remember, understand, communicate, hear, and interact socially. However, those with mobility concerns represent the most significant percentage of people in the U.S. with disabilities.

Some disabilities are easily hidden from others, sometimes making it harder for others to understand that a disability exists. Those with outward signs of a disability, while more readily apparent, may also have concerns about stigma and be less willing to socialize or engage with others.

If your loved one is diagnosed with a disability, do your due diligence. Learn about the disease, condition, or issue of concern. Understanding what the disability is and what complications may arise helps you determine their needs and how best to provide for them. Additionally, you can identify what daily activities are reasonable for the person to perform as well as their daily needs so you can find the best way to support them.

The dimensions of disability

We can talk about the types of disabilities in various ways. In simple terms, we see disabilities as belonging to three general categories. These include conditions that cause an impairment, activity limitation, and or participation restrictions. A person can have one or more of these concerns, and the amount of help a loved one needs will, in part, be determined by the severity of each.

  • Impairment. A loss of body function or structure (e.g., amputee); a loss of mental function (e.g., dementia, memory loss); vision or hearing loss.
  • Activity limitation. As a result of a disability, one may not be able to walk, solve problems, see, or hear sufficiently to perform certain activities without assistance.
  • Participation restrictions. Daily actions such as working, recreational activities, or social engagements may be challenging, and access to healthcare and prevention measures may prove difficult.

Causes of disabilities can be multifactorial and include genetic conditions (Down syndrome), developmental or attention-related issues (ADHD, autism spectrum disorders), related to an injury, or can occur secondary to underlying medical conditions like diabetes (nerve damage, kidney disease, vision changes).

Additional health risks for disabled persons living with a disability

Through research, the WHO and other health professionals have found that those living with a disability are twice as likely to have one or more additional health concerns. Concurrent illnesses or behaviors that can negatively affect health outcomes may include:

  • Obesity
  • Smoking
  • Heart disease
  • Stroke
  • Diabetes
  • Depression and other mental health conditions

Furthermore, the CDC warns that those with disabilities may be at a higher risk of developing a more severe infection from COVID-19. Protect yourself against COVID, paying particular attention to proper hygiene and minimizing exposure risks.

How should you refer to someone who has a disability?

First and foremost, understanding how your friend or family member feels about their disability is key. Knowing that they are not okay with it or what stage of acceptance they have reached helps you analyze their thinking and feelings.

There are various ways that other people refer to the disabled these days. Regardless of whether one uses a "person-first language" or an "identity-first language" to describe someone in the disabled community should be driven not by stereotypes, not by societal norms but instead be based on the individual’s preferences.

In a survey study, researchers assessed 519 disabled people from 23 countries with various disabilities. Of those evaluated, 49% preferred identity-first language, while 33% opted for person-first language. The remaining respondents had no preference or, in some cases, varied depending on the type of disability. Additionally, some people were comfortable with both types.

Person-first language

Person-first language (to refer to someone with a disability) uses the people aspect first, with an example being “people with disabilities.” Many who use this communication style feel it removes the dehumanizing language commonly chosen in the 1900s. This terminology aims to remove stigmas associated with various disabilities, health conditions, personality characteristics, and more. For example, you might say, "Jane lives with Type 2 diabetes."

Identity-first language

The identity-first language uses identity first, with an example being “disabled people.” This format “Emphasizes the disability identity of the person” and has allowed once-derogatory terms like "crippled" to be used in a positive light within the disabled community. For example, you might say, "John is autistic."

Why does it matter how we refer to people with disabilities?

How people refer to us matters. How disabled people are addressed by others may have beneficial or undesirable impacts on their sense of self-worth and general well-being. How that individual sees themselves privately and as a component of society shapes their lives and how well they adapt to living with a disability. For some, the opinion of others matters.

If you know someone who has a disability or was recently diagnosed with one and isn’t sure how to refer to them, ask them. By doing this, you may make sure that you are treating them with respect. Additionally, you can discuss your loved one with others in a way that won’t upset them. You show them respect and kindness by doing so.

5 tips for caring for a disabled loved one

When caring for a disabled friend or loved one, consider a few measures to keep the mental health and well-being of the individual’s (and your own) best interest at heart. Here are five tips to help you succeed in caring for your loved one.

1. Be patient

Always be patient with both yourself and your loved one. Do not rush through tasks risking injury to someone or failing to be present. Get your head in the game. Leave your emotional, physical, and other concerns at the door before providing care. Allow the person to feel not like a burden but loved and cared for with compassion and respect. Of course, this can be easier said than done, but pause when needed, clear your head, and move on. Finally, don’t take things personally. Mood disorders can be commonplace among the disabled. Recognizing that mood changes and stress responses will occur. Recognize that this doesn’t mean your help isn’t appreciated, needed, or wanted.

2. Have a great support network

Ask for help when needed. Reach out to family members or friends to help when appropriate. Work with friends, family, and the individual to determine what works and to establish who may assist in what aspects of care. Have that backup in case you fall ill, need to go away, or need a few days off. Delegating care to others may be necessary or desirable to prevent burnout.

3. Self-care

You cannot sustain complete care without a break. Taking time for a short break may mean walking around the block, doing deep breathing exercises, meditation, or sudoku. You may also need more time to recharge with a day or two off. The last thing a person wants is for the caretaker to get sick or hurt, lose compassion, or burn out. Additionally, you can:

  • Make sure your expectations for yourself aren’t to be perfect.
  • Ensure that caregiving doesn’t define you.
  • Make sure to still engage in social activities and interact with other family members and friends.
  • If you feel run down, sick, exhausted, or emotionally distressed, seek medical help from a healthcare provider.

4. Speak up

If something is above your means, whether physically or emotionally, ask for help. But in addition to this, empower your loved one to engage with others. Support your family member or friend by emphasizing the positives and what they can achieve, not focusing on what they cannot do.

5. Have a backup

Have a system set in place for emergencies. If you are the caregiver and you get sick or need to go away, have someone who already knows the routine and can step in seamlessly to take your place. This will allow you to remain less stressed, knowing they will be cared for if needed and provides the individual with a sense of security.

Disabilities and providing care

Caring for any friend or family member can be stressful, challenging, demanding, and sometimes seem like a thankless job. If you have a loved one diagnosed with a disability and will be providing care, you are not alone. Many resources are available to help you navigate the laws protecting individuals with disabilities, services available, and more. Remember that even if you are a sole caregiver, taking care of your health is just as important as ensuring the health of your loved one.

Never be afraid to ask for help from others, and be a proactive advocate for your friend or family member. Caring for an individual with a disability can be fraught with difficult roads ahead. There will be bumps and hurdles. But together and with the right resources, social networks, and perseverance, you can do so with compassion and empathy and improve your and your cherished one’s quality of life.

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