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Fostering resiliency in families and caregivers of individuals with disabilities

By Mariagrazia Buttitta September 26, 2019

It was like the world had collapsed on me, or worse. The words pronounced by my eye specialist felt like a sudden punch to my stomach, leaving me bruised and gasping for air. My life seemed over, or so I thought when I received an eye diagnosis of cone dystrophy at age 14. To this very day, it is emotional to recall the impact that diagnosis had on me and the confused look on my parents’ faces as they heard, for the first time, phrases such as “legally blind” and “disability.”

We all stood there in complete shock. Our faces must have looked ghostly white, perhaps hoping this was a nightmare from which we would soon awake. Instead, we left the office feeling defeated and frightened of what my future would look like, literally. The following day, I gathered all the energy I had left and Googled “cone dystrophy,” learning that it affects roughly 1 out of every 30,000 individuals (according to the National Organization for Rare Disorders). That number did nothing to lift our spirits or morale. My family still feared for my future and, the truth is, so did I.

According to the World Health Organization, nearly 1.3 billion people have a form of vision impairment. Furthermore, the Centers for Disease Control and Prevention reports that 1 in 4 people in the United States lives with a form of disability. So, why did my parents and I feel alone at the time of my diagnosis?

 

Media portrayals of disabilities

Today, it is clear to me that both my cultural background and the way that the media portrays individuals with disabilities might have influenced how my family and I coped with this news.

Growing up in Sicily, I experienced firsthand how my culture viewed disabilities as a weakness. Generally, individuals with physical or mental disabilities were looked down on and were not provided with the same opportunities as other people were. For example, it was assumed that I — someone affected by an eye condition — had less to offer; therefore, I was discouraged from pursuing education. Being the first person in my family with a visible disability did not help us know how to move forward either.

In addition, the media seems to send mixed messages regarding individuals with disabilities. Most of us have compared ourselves with models on magazine covers or wished to be the next Jennifer Lopez or George Clooney. But rarely does our society associate beauty with a physical disability. How many times have you watched TV and noticed someone with a visible disability? GLAAD’s annual report on inclusion notes that less than 2% of the main characters on American TV shows have a disability. A 2015 “Sandy’s View” column for The Chicago Lighthouse website discussed both the positive and negative stereotypes used when representing disabilities in the media. Both stereotypes seem to be extreme — one representing these individuals as victims, and the other representing them as “exceptional” individuals with unrealistic powers.

It is no wonder that my family and I were uncertain about my future. We lacked the proper resources and role models that could have helped us combat some of the negative stereotypes. Despite this, we overcame tremendous obstacles. Having a physical disability did not limit my life, and the realities of my disability only made my parents stronger and more resilient. In addition, it made them more educated about disabilities and cognizant of what other families and caregivers might experience.

 

Accepting and moving forward

Admittedly, my diagnosis of cone dystrophy was life-changing, both for me and my parents. The families of individuals with disabilities may have a difficult time adjusting and can develop their own mental health problems as a result. A study by Juan J. Sola-Carmona and colleagues that looked at 61 parents of blind children found that anxiety is higher and well-being is lower among these parents compared with the general population (published in Frontiers in Psychology, 2016). In general, families with individuals who have a disability are at greater risk of developing psychological problems. However, if these families learn how to cope well, it can increase the strength of the family. Here are the top five things that helped my family and me at the time of my diagnosis:

1) Reaching acceptance: Learning to accept the diagnosis was one of the hardest things for all of us, and I can assure you that it didn’t happen overnight. Acceptance developed with time. Once we traveled to various specialists and knew there was nothing that could be done to cure my vision, we needed to figure out how to live with the diagnosis effectively. After reaching that point of acceptance, we were able to figure out how we would cope and move forward as a family.

2) Seeking professional help: I was a teenager at the time of my diagnosis. The diagnosis was devastating, and it took a negative toll on me. As I got older, I had no faith in my ability to be successful, and that led me to feel helpless and useless.

Counseling proved extremely beneficial to me, but that came later in my life, when I was in my 20s. Talking to someone was therapeutic. My parents were extremely supportive of me, but they were also emotionally impacted by witnessing my struggles. Therefore, it was nice to find a therapist with whom I could talk and share all my emotions without feeling the guilt of hurting anyone else.

Once I gained confidence in myself, it automatically made the process much easier on my parents. I was a happier person to be around. Seeking professional help can be equally effective for family members and caregivers, providing them the time and space to focus on themselves and their own experience.

3) Educating ourselves: We spent hours educating ourselves as a family about my eye condition. We looked at hundreds of websites, articles, journals and magazines. After gaining that understanding and knowledge, we could start educating others about my level of blindness, why I walk with a white cane, and why I have to wear sunglasses all the time.

4) Learning about resources: Neither my family nor I had any idea about the resources available to me. Through research, however, we came across various resources, including the Commission for the Blind. After joining, we learned about still other resources, such as the various tools and technologies that would help me navigate the world with confidence. The resources reassured my parents that I, too, could go to college, get a job, and live a life like people without disabilities.

5) Having role models: Despite the number of individuals with a disability, we can often feel alone or misunderstood. Over time, my family and I met other individuals who, despite being blind or having other forms of disability, managed to live a successful life. As a result, my family and I started to view disabilities differently. No longer did we view my disability as a barrier. More importantly, we learned that we were not alone. My dream of going to college would become a reality.

 

A counselor’s perspective on disabilities

Throughout my graduate studies in a clinical mental health counseling program, I took note of a significant gap in how professionals are trained to work with those impacted by a visible disability. So, from there, I was on a mission: I rolled up my sleeves and got to work.

First, I interviewed Judy Schwartzhoff, a licensed clinical social worker with more than 30 years of experience in the mental health field, to ask her point of view on this subject. I posed several questions to her, including “How competent do you feel working with individuals, families, and caregivers of those affected by a visible disability?” and “Do you feel there are enough trainings provided to help deal with these clients?”

Her response didn’t surprise me one bit: “As mental health practitioners, we are often trained to treat the  emotional side of things, but I agree that we could use more knowledge and training in this area. However, if we do come across the issue, we tend to overlook the disability and stick with the emotional problem because that’s what we are trained in. We continue to separate mental health issues from physical disabilities, but sometimes, the two go hand-in-hand. As professionals, we need to expose ourselves to a diverse population and become more inclusive and know how to deal with different abilities as well as be able to assist their families and caregivers.”

I walked out of the office feeling determined and ready to put my thoughts on paper. Having witnessed, firsthand, the impact this issue had on my parents, I had to bring light to this issue. I immediately asked myself, a soon-to-be mental health professional, a question: What can I do to ease some of the worries and anxieties surrounding individuals affected by a different ability and their families and caregivers?

 

What mental health practitioners need to know

The chances of working with clients who have a visible disability, or their families or caregivers, are high. The truth is, we all will experience a form of loss in physical functioning at one point or another. This could be as simple as experiencing hearing or vision loss as we age. Even so, mental health professionals may feel incompetent if they’re lacking the proper resources and knowledge regarding these clients’ needs.

The day of my diagnosis, I recall a sense of fear and worry hovering over me. My parents had similar feelings, but they also experienced other emotions such as disbelief, sadness and confusion. An article by Josephine Defini in VisionAware described how blindness really affects the entire family as a whole — and I believe this truth can easily be applied to any form of disability.

As mental health professionals, we must be cognizant that each member of the family (or caregiver) might be experiencing a different state of mind and level of acceptance. Therefore, each person may require additional time to process and cope with the diagnosis. As practitioners, we want to be cautious not to assume that all family members are dealing with the news in the same manner or that they are even ready to deal with it at all. As a recent graduate counseling intern, I’ll acknowledge that I catch myself wanting to fix clients’ problems right away. I need to remind myself that everyone has his or her own timeline for healing and processing.

What follows are my top five recommendations for mental health professionals:

1) Use a psychosocial assessment: A psychosocial assessment can be helpful to gather information about the level of acceptance, skills needed to cope, resources, and any other observations noted for the individuals and their families or caregivers (Defini). By gaining this insight, mental health professionals will have a better understanding of what services are needed. For example, when working with an individual who uses alcohol as a way of coping with their issues, co-occurring treatment can be offered. Understanding the client’s individual experience of a disability can reduce bias or assumptions.

2) Use person-first language: In a 2014 article for the American Counseling Association’s VISTAS, Susan Stuntzner and Michael T. Hartley suggested that counselors use person-first language and avoid using negative phrases that could make clients feel less empowered. This would include saying “person with a disability” rather than “disabled person,” for example. In addition, don’t jump to conclusions about how clients feel about their disability. For example, don’t assume that they feel any weaker or have lower quality of life because of the disability. Speaking from my own experience, I think that being open and asking your client to educate you is also important. Everyone deals with a disability in a different way. Ask your clients what they prefer, and do not assume anything.

3) Know your resources: As mental health professionals, it is fundamental to know the resources that can be most helpful to clients. For example, as Defini suggests, if someone is experiencing vision loss, be sure to know the proper state services or local community programs that are available, such as rehabilitation, vocational rehabilitation, or low vision services. As mental health professionals, it might be impossible to know all of the resources out there, but we can be knowledgeable about who might have that information. Listed at the bottom of this article are some resources that may be helpful to you and your clients. Don’t be afraid to seek out information about resources that are more specific to each client’s needs and location.

4) Understand the adjustment process: It is important for mental health professionals to understand their clients’ adjustment process, including awareness of when they found out about their disability and how they coped. If individuals or their families or caregivers are not yet ready to process anything, they might not be able to utilize available resources to the best of their ability. Depending on how well adjusted they feel, the treatment will vary. Specifically, if they just found out about the disability, counseling might need to focus on the grieving process rather than on finding services and moving forward. Additionally, understand the individual’s barriers and that of their caregivers or family members (Stuntzner and Hartley).

5) Know the proper techniques: Be competent and knowledgable about what techniques can assist your clients. Many techniques used center around self-compassion, forgiveness and resiliency (Stuntzner and Hartley). Family counseling may also be helpful to clients and their family members because it gives each individual the opportunity to be open about their needs with each other and the counselor. One intervention may be to have families engage in activities together (e.g., take a meditation class, go to dinner, see a movie, visit a museum) to keep the disability from overtaking their lives.

Mental health professionals shouldn’t be afraid to use their own judgment to see what their clients and clients’ family members or caregivers may need. Every person copes with a disability differently, and everyone is going to need different strategies, so get to know the needs of your clients and their families or caregivers.

 

Conclusion

I wish that I could go back in time and wipe clean the past — especially the day I received my diagnosis — to remove the fear and anxiety my parents felt. Sadly, I can’t. But as a recent graduate counseling student, career counselor intern, author, motivational speaker, and mental health and disability advocate, I aim to help decrease the pain and fear that others may experience. I plan to do this by educating individuals who have disabilities, as well as their families and caregivers, and by setting as example, because a disability does not have to define or determine our future or the future of our loved ones. As figure skater Scott Hamilton once said, “The only disability in life is a bad attitude.”

 

Resources

https://www.familyresourcenetwork.org/

https://nfb.org/

https://sites.ed.gov/idea/parents-families/

https://www.psychologytoday.com/us/groups

https://www.cdc.gov/ncbddd/developmentaldisabilities/links.html

rarediseases.org page on cone dystrophy

 

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Mariagrazia Buttitta is an author, motivational speaker, and mental health and disability advocate. She holds a master’s degree in counseling education from the College of New Jersey and is national certified counselor candidate. Contact her at buttitm1@tcnj.edu and through her website at embracingyourdifferences.com.

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

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