How to Thrive in Your Community
ALTHOUGH IT SEEMED FARFETCHED while I was lying in bed on a ventilator, almost completely paralyzed, I still had a lot to offer. You do too. During rehabilitation, make sure this goal is on your short list: returning as an active participant in community life. This vision of yourself will enhance your recovery and help you strengthen vital connections beyond your immediate family.
There are four things to consider as you integrate back into your community: friends, employment and finances, advocacy, and helping others.
1. Friends are essential to a satisfying life, and no doubt you have enjoyed the enrichment of long-lasting friendships over the years. As odd as it may seem, after your injury, you may wonder where your friends have gone. Just when you need them the most, they seem to have disappeared. What’s up?
The fact is, if you are unable to speak due to your injury, have difficulty speaking clearly enough to be understood, or have trouble understanding what others are saying to you, your friends may be so uncomfortable at seeing your disability—and not knowing how to “be” with this new version of you—that they will shy away from visiting. Or, if your injury has left you in a wheelchair, fully or partially paralyzed, friends may be at a loss as to how to interact with you, especially if your friendship revolved around activities such as hiking, hunting, skiing, and so on.
If this is the case, you’ll have to take the lead. Reach out to friends and invite them to visit you at your home. Or make plans to meet at a coffee shop you both like. If the weather is nice, maybe you’ll want to meet at a local park. Find a way to let your friends know that even with your new disability, you are still you—the person who loves supporting your favorite football team, or watching romantic comedies, or hanging out at the lake. Let your friends know that you understand it might feel awkward right now, but that will change with time. You may have to find new activities to enjoy together, so be open to making suggestions. Explain that you are in rehab and hope that you will continue to make progress toward a way of life that resembles the one you were leading before your injury. Put your friends at ease; sometimes asking questions like What do you want to know about my life in a wheelchair? is the icebreaker your friend needs. Mailing a handwritten letter may be a good first step toward reconnecting. You’ll know the best approach. And, as you reach out to friends, enlist the help of your family when needed.
Joining a support group can be helpful too. You can learn how others in the group are maintaining old friendships. They, too, will have experienced that “where did everybody go?” moment. Finding out what works for others will give you some ideas you may not have considered for trying to reconnect with your friends.
There will be some friendships that just don’t survive. And, while that’s sad, I have some good news for you. Your injury will allow you to meet new friends (more about that later in this chapter), folks you never would have met otherwise and who will enrich your life tremendously.
After the devastation of your injury, the effort to maintain friendships and forge new ones may be a difficult task at first, but if you keep trying, you will see results. Sustaining friendships and other meaningful connections is as essential to your recovery as anything modern medicine can do for you. Don’t underestimate the power of your support system. That team includes your work colleagues as well.
2. Your work is an important place to find connection with others, even though you may not socialize with them outside the workplace. Your job may be how you earn a living, but it’s also directly tied to your self-esteem and your community. It adds structure and purpose to your day, and can benefit your mental health. Work provides you with a built-in network of friends and colleagues, some of whom may be part of your social life. And, of course, returning to work is also fundamental to your financial health. Having a job means not only that you can support yourself and your family but that it’s likely you have employer-provided health insurance, which is critical for obtaining the ongoing health care and rehabilitation services you need.
Returning to work is a big step toward getting your life back after your injury. Depending on the physical demands of your job, you may be able to return; if not, you’ll need to learn new skills for a new career. During discharge planning, ask to meet with local vocational rehabilitation services to discuss your job opportunities. Establish a strong working relationship with your vocational rehabilitation counselor so that they understand your employment interests and can match you with appropriate opportunities. If discharge planning is too early for this kind of referral, you can ask your social worker or therapy team for a referral to a career counselor when you are further along in your rehabilitation. After a traumatic injury, some health insurance plans will cover this kind of counseling; disability insurance plans almost always do. These professionals can help you by identifying opportunities that you might not have thought of and showing you how to get the necessary training.
Find programs that train people with disabilities to transition to new careers. Your local community center is one place to start, as are your local colleges, universities, and vocational schools. If you don’t have a college degree (associate or bachelor’s), you may consider acquiring (or finishing) one; statistics show that college graduates have far greater employment opportunities and that your earning potential will double or triple. You may choose to attend a community college class (frequently available online) before enrolling in a fulltime degree program. The experience will inform you of your ability to learn (which may have changed after your injury), and your physical endurance (my arms and hands are too weak to take notes, for example, so I either use a scribe or record the lecture).
If training or more education is what you need to enter a new field, find out as soon as possible if your disability insurance policy will be sufficient to pay for it, or if your employer has funds for that kind of expense. At the same time, begin the process of applying for SSDI (Social Security Disability Income) and SSI (Supplemental Security Income); both of these have programs that will support you while you train for a new job. The Social Security Administration’s Plan to Achieve Self-Support (PASS) program is designed to help you pay for items necessary to search for work, such as wheelchairs and computers. Note: You must apply for, or already receive, Supplemental Security Income (SSI) benefits to qualify for the PASS program. You may also be able to continue receiving SSDI while you are transitioning to employment using Social Security’s Ticket to Work program.
If you’re having trouble paying bills, medical or otherwise, before you return to work, there are a number of additional programs and organizations that can help. The Patient Advocate Foundation is a national organization that can help you 1) negotiate bills with hospitals, doctors, and insurance companies; 2) access rehabilitation organizations; and 3) handle any issues with a previous or new employer. It’s a well-run and highly charitable organization that assists many people with disabilities and chronic illnesses. You may also want to investigate local foundations and community health programs (you’ll find more information in the Resources section on page 283).
If you won’t be able to return to your old job, and it included a health insurance plan that paid for prescription drugs, you may still be able to access those prescriptions through prescription assistance programs, which most pharmaceutical companies will offer. These programs provide free or low-cost drugs to uninsured people who are unable to afford their medications. The Partnership for Prescription Assistance is another resource; a clearinghouse for more than 475 public and private assistance programs, it includes nearly 200 pharmaceutical options. RxAssist, NeedyMeds, and many others (see Resources, page 284) offer steep discounts on drugs and prescription drug discount cards.
If your injury makes it impossible for you to return to work or to train for a new occupation, Social Security has funds for those who are permanently disabled. Your social worker will help you with the necessary applications. But even if you’re unable to work again after your injury, you can still be a valued member of your community. Advocacy and volunteer opportunities are rewarding ways for you to connect with others beyond your family and friends.
3. Advocacy: Support the local disability community in whatever ways you can. Grassroots advocacy is an important part of how citizens affect changes to our society. It’s an effective way to be involved in the development of the laws and policies that affect our lives—to make our voices heard. It was through the advocacy of folks like you and me that the ADA became law, greatly improving quality of life for those with disabilities. The ADA made us visible. Laws that made it possible for us to enjoy public places with nondisabled people helped us, our families, and our communities in too many ways to count.
There are many ways to be an advocate. If you’ve joined a support group, there may be members who are also part of a local chapter of a larger advocacy organization or who can point you in the right direction. Disability advocacy groups work to improve rights and access for people with disabilities, but they may focus on more specific causes; these may be access to education, or to equipment, or to work, or to another area where there’s a need.
There are many advocacy groups to choose from; some of the larger ones with a national presence include ADA Watch, a project of the National Coalition for Disability Rights; Americans Disabled for Attendant Programs Today (ADAPT), a national grassroots community that works to assure the civil and human rights of people with disabilities; the American Association of People with Disabilities (AAPD), a national voice for change in implementing the goals of the ADA; and the Patient Advocate Foundation (PAF), which is particularly useful for negotiating business issues related to access to care, medical debt, and job retention. You’ll find a list in the Resources section on page 284.
As part of your advocacy, be sure you are registered to vote in your state. Ask for an absentee ballot, because sometimes your voting site isn’t accessible or the weather isn’t conducive to traveling to the polls.
Attend an Advocacy Day event. These are organized by state and bring together groups of people with specific ANIs to raise awareness of their issues and advocate for public policy initiatives. These events are a great opportunity to make your voice heard in your state legislature and provide a time to meet your local representatives in person.
Your elected officials, and those legislators in position to change policy, need to hear directly from you, so it’s important that you learn about the legislative process. The local and national advocacy groups that you belong to will establish a list of priority policies that they believe will have the greatest impact on the quality of life of their members. Your advocacy group can assist you in finding your representatives in the House of Representatives and Senate. If you have the opportunity during Advocacy Day, or if and when you happen to be in Washington, DC, arrange a visit to your representative’s office to meet in person. There’s nothing quite like face-to-face interaction to convey the importance of an issue.
4. Helping others: By helping others, you can find a positive way to integrate back into the community. You may be thinking: Helping others? I’m in need of help myself! Yes, your life has new difficulties, but there are still opportunities to help others in need. As you do, you will continue to nurture your resilience.
Volunteer to be a mentor at a local school or as one of the children’s story-hour readers at your local library. Your local community center or senior center is usually looking for people who can volunteer to teach a class on a one-time basis or once a week for six weeks, for example; perhaps you can give a presentation on gardening in small spaces, or savvy investing strategies, or writing poetry, or taking nature photos—wherever your interests lie. Food pantries are always in need of volunteers, and so are hospitals. Perhaps you’d like to spend three hours a week at the patient information desk, or in the hospital gift shop, or the coffee shop. The opportunities are as limitless as your interests and imagination.
Perhaps you would like to participate in a local organization that does charitable work. Find a chapter of the General Federation of Women’s Clubs, Lions Club International, Rotary International, or another well-established group. Once you’ve attended a few meetings, you’ll figure out what kind of role you want to play in their efforts to support members of the community.
In my city, the Rochester Spinal Association (RSA) has a monthly support group that includes a one-hour social event, followed by a one-hour presentation on a topic of broad interest. The RSA provides members with an opportunity to express their feelings, learn helpful information, improve social skills, and realize they are not alone. It’s also a good place to network—about jobs, doctors, new adaptive sports programs, grants for equipment and therapy, and new therapists, including those for acupuncture, massage, yoga, and tai chi. Most important, through its fundraising efforts, the RSA provides grants to help ANI survivors purchase assistive equipment, get health care if they lack insurance, and improve their quality of life by providing access to fitness, nutrition, and smoking cessation programs.
You can help with fundraising—volunteers are always needed. And being part of an effort to raise money to help people with disabilities enjoy a better life is rewarding. While the amount of money your local organizations distribute may be small, the impact it has on the people who receive the funds is enormous. Through your participation, you’re not only helping people but also helping increase general awareness of the challenges that people with ANI face. And, you’ll be making many new friends.
Whenever I’m out at a social event—at dinner, a play, a music performance—people tell me that I’m an “inspiration.” I’ve learned that my positive outlook, willingness to be seen in public, and improvement in function over the years makes them believe they can achieve the same recovery from their own severe injury or illness. At first, I was embarrassed by this attention, but I’ve learned to embrace it and pay it forward. I believe that my presence sends a message: If you hire someone with a disability, work with someone with a disability, or are able to help someone with a disability, you will understand how talented and capable they are. Or, if you are that person with a disability, I’m hopeful that my example will give you a more positive outlook on your own ability to be a valued member of your community. So, go ahead: Be an inspiration.
You are just as worthy after your injury as you were before it. When you establish yourself as an active member of your community, you foster connections that show you just how significant your role is—as a friend, a colleague, a mentor, an advocate, or a volunteer.
After ANI, you may feel like retreating to a hermit-like existence. But, trust me, you’ll feel so much better if you resist those thoughts and put yourself out there. Find a way to reconnect with friends and to get back to work or transition to a new type of employment. Become an advocate for others with a disability and find a way to help those in need in your community.
It’s important for you as well as for members of your community that you remain an active participant in social and civic affairs. Living with a disability does not mean you no longer have meaningful contributions to make—you can develop a role as an advocate, as a mentor, and as a person who cares about quality of life in the community at large. These activities will add meaning to your daily life.
Turn to friends and family members to help you reenter community life, and be emboldened to try membership in organizations you previously thought were too pedestrian for you (or perhaps too elite). Use your new status to become more outgoing. You’ll enjoy how this shift in approaching strangers in your community transforms your life.
Our quality of life is enhanced by our connections with others. Your willingness and determination to become and remain a visible person in your community will bring joy not only to your own life but also to your family and to a long list of strangers who will become trusted friends.