HEARTSIGHT
CHRISTINA LLANES MABALOT
Advocacy During Covid-19
Promote collaborative engagement and act now. Get and keep connected with as many people, organizations, and groups as you can handle.
By the time this column is published, it will have been three months since the Centers for Disease Control and Prevention (CDC) released the guidelines for isolation and social distancing. While I wish this period is just a nightmare from which we can all wake up, or a free trial for quarantine which we can cancel, our current situation, perhaps with some modifications, could be our "new normal."
Several good things have resulted from our strange situation, don't get me wrong. Most of society has united to fight the virus. Families enjoy more bonding time, and parents are once again the decision-makers for their children's education. The air is cleaner. There is a substantial amount of home improvement. Our resilience has increased, as evidenced in a lot of recent comic relief posts and videos on social media. Most impressive is the reinvention of socialization and events. Students study and interact in visual classrooms. Newborns are introduced to the family through video chats. Weddings and special events are conducted live on Facebook, family reunions on Zoom, and so on and so forth.
These marvels pale, however, in comparison to the ravages of the pandemic. Unimaginable tragedies include numerous Covid-19 cases and deaths, a global recession, political upheavals, an astounding increase of psychological and mental cases, domestic violence, divorce, and others. Overlooked in the chaos is our special needs community, stuck in a mire, unable to move to the so-called new normal, and regressing, in our vision, towards our goal full inclusion.
The following is some disturbing information I've gathered over the past months. Employment: Several people with special needs have lost their jobs. Since small businesses and non-profit organizations are mostly closed, their employees with disabilities have been furloughed indefinitely. I know a blind person with some health complications who was honorably dis missed by his employer of 15 years due to his vulnerability to Covid-19.
While the loss of employment is a situation that is normal across the board, society needs to understand that our circumstances can be more complicated. People with disabilities are one of the most marginalized minority groups in terms of employment numbers. Competing with the 28 million unemployed people without disabilities to land a job during this pandemic would be practically impossible for our sector. Individuals who were allowed to work from home seem to have been blessed. Still, at such short notice, workers with disabilities haven't been effectively set up and transitioned for remote work. Consequently, several employees don't have adequate support and resources that used to be available in the office. Such needs may include adaptive technology and equipment, office modifications, or a safe and operational space for optimum productivity.
Social distancing and isolation: In general, the guidelines on social distancing have not been reasonable for the majority of persons with special needs. For example, a person with intellectual or behavioral disabilities who can't get a hug of affirmation from a personal caregiver may develop anxiety. It is also challenging for them to understand all the new rules and changes that are suddenly imposed. Among adults living by themselves, loneliness is predominant, and video-conferencing with a therapist or a family member may just not provide consolation.
The life-sustaining, hands-on assistance is suddenly limited or unavailable to several individuals who rely on it. This may be caused by a variety of reasons related to the pandemic, such as the person may be infected, or transportation isn't available, or the staff is no longer allowed to provide personal care. Unfortunately, setting up services with an alternate caregiver would take forever because of system policies. Another factor to consider is the difficulty in maintaining standards of hygiene during home visits to protect both the staff and the individual.
We, the blind or visually-impaired, have lost our freedom to touch and carry on decent conversation with the six feet distance requirement between individuals. I'm not even allowed to hold on to my husband's arm in public. The fear of missing out might get us before the virus does.
Hearing-impaired individuals can no longer lip-read, with masks or respirators covering a person's mouth. With the lockdown, interpreters wouldn't be readily available when they're needed.
Transportation: Limited or unavailability of public transportation has far-reaching consequences for the majority of the nondriving people with special needs and care providers. Mobility to places for doing essential business isn't accessible, posting a threat to survival. Neighbors are less likely to offer transportation, and ride-sharing— which easily became the most accessible transportation for people with disabilities— has become scarce, expensive, and risky.
CHORUS FOR CHANGE: At this crucial time, our greatest strength is our community, and advocating together should be the order of business to get people with disabilities unstuck. While one voice can make a difference, many voices together can create a movement for change.
Education: Overall, families of children with special needs are overwhelmed with the changes and disruptions. With schools, service providers, and support systems closed, parents find themselves assuming multiple full-time roles of special education teachers, caregivers and therapists, on top of their jobs, that is, if they still have one. Throw into this confusion crucial responsibilities like running to the grocery stores to stock up on essentials, making sure medications are adequate for a good while, setting up online learning, household management, and protecting the family from the virus. Students are sent home with their learning packets, but for the most part, parents of children with IEP or 504 plans barely have support and resources to conduct the lessons. Eventually, the children may lose the knowledge and skills they worked so hard to gain. Individuals who rely mainly on routine and structure, like those with autism spectrum disorders, may have more frequent meltdowns, consequently escalating emotional problems. On the other hand, parents with special needs may not be technologically equipped to guide their children through virtual classes at home.
Healthcare, service providers and congregate facilities: Generally, health and wellness support systems are not available during the lockdown, and may not be feasible to be conducted through the phones or the internet. Several group homes and residential institutions have closed, thus sending residents back to their families who don't have the time or means to properly care for them. This situation posts the potential breakdown of household units. Meanwhile, residents of institutions that have remained operational are exposed to higher risks of contracting the virus.
Civil rights violations: The ugly reality is that some individuals with special needs who have contracted the virus have been denied the treatment they deserve because of medical rationing. In hospitals where there are more Covid-19 patients than can be attended, healthcare practitioners follow guidelines as to who gets care first, and persons with disabilities are not in the list. Hospitals implement a "no visitors" policy, and there are no accommodations for the unique needs of patients with disabilities, like interpreters, sighted guides, readers, note-takers, or personal care providers, which are vital to medical visits.
These are just a few among thousands of paralyzing situations in our new normal, and we cannot go on this way. Unfortunately, our government and private voluntary organizations, also swamped with never-ending emergencies and crisis management tasks, may not be there to help alleviate our situation.
OUR BROTHER'S KEEPER
At this crucial time, we are our brother's keeper, and our greatest strength is our community. Advocating together should be the order of business to get people with disabilities unstuck. The word "advocacy" is derived from the Latin words ad and voce, meaning towards having a voice. While one voice can make a difference, many voices together, in harmony, can create a movement for change. Since not every individual with special needs can speak up, I appeal to those who can, whether for yourself or for a family member, to help the rest of the community navigate to the future we face. Socrates said, "The secret to change is to focus all of your energy, not on fighting the old, but on building the new."
The first step is to know your rights, don't just accept what institutions tell and give you. However, you can't advocate for something you don't know. Look into ndrn.org where you'll find disability rights for every state about healthcare, education, employment, and those relevant to this pandemic for persons with special needs. Be alert and report discriminatory practices that impact people with disabilities. If you see something, say something. Email your state advocate, congress representative, senator, and everyone in your network who needs to know your situation. Get informed and share information. Check into all websites for your specific disability. For the blind and visually impaired, the sites are NFB.org, ACB.org, and AFB.org. If you can, listen to podcasts. I recommend Disability Matters with Joyce Bender, where I get a lot of information.
Promote collaborative engagement and act now. Get and keep connected with as many people, organizations, and groups as you can handle. Groups don't need to be formally organized. You can set up a group chat with parents, families, and other individuals with disabilities. Make it a communication hub to check on and encourage each other, share information, issues, or challenges, mobilize support, and promote possible changes. For example, if you know of a software, an app, learning resources, or adaptive equipment that would be helpful, put out that information. Set up a watch party for videos while interacting with your network. If you, or someone has an idea to create something, solicit the support necessary to develop this innovation. Inspire everyone to do a little bit more for the community every day, even if it is simply sharing cheer, or a new teaching trick, or a reward system you've discovered that works for your child. Community members who are unemployed might want to look ahead in building the new technology-based society. If there's one thing that's certain during this unchartered time, it is our world abruptly transitioning to a virtual one. If your expertise is Information Technology, then, you're almost there. Look for a niche and develop new services you can offer. If you're not technologically adept, now is a good time to learn. Search for gaps that you can fill, or why not start in the special needs community? Some suggestions are: the virtual transformation of community-based activities, making materials accessible online, interactive learning videos or games, tutorials for parents and children, homeschooling tips, videos for physical, mental and emotional wellness, circle time activities relevant to distance learning, and calming or relaxation activities for parents and children. Another suggestion is partnering with agencies to start a hotline for various situations and counseling.
There's also a variety of business opportunities for people who are gifted with arts and crafts. Look along the line of masks, gloves, protective apparel, and accessories that would help people avoid contact with others while conducting daily transactions. Meanwhile, diligently search for openings in the job market and consistently submit applications, at least two every week. While searching, identify a field that is on demand and, if possible, get certified for the necessary skills.
For parents, take time to help your child understand the changes as well as the new rules for hygiene and social distancing. Introduce a structure or routine for your kids to settle in the new normal. If teachers aren't able to provide a system of delivering accessible content online, work instead on projects or activities that you and your child will enjoy doing together. You know how your child learns best, so use learning methods that have worked in the past. In fact, your child might enjoy self-learning and reading on things that interest him. Keep in mind that maintaining emotional health and essential skills are the immediate priority. Don't allow yourselves to get a caregiver burnout. Set up regular schedules for breaks and relaxation. You need to maintain wellness to properly care for your child. Identify a mentor or someone to whom you could vent your frustrations. Individuals who need direct support care workers should reach out to their local centers for independent living. They can also ask family members or friends who are willing to provide support. Think of other ways your needs can be met. Also, always set up a back-up plan in case all else fails.
In the meantime, don't stop corresponding with your local, state and federal authorities. We who have less privileges in society should have more laws in place. Let's take courage to face this global catastrophe. After all, there's no telling when or if this will ever be over. We do not know what recovery will look like. Everything's uncertain, except what we choose to focus on. A crisis always brings out the worst and the best in human beings. If we focus our energy on opportunities for growth, we would have reset for the better when the disruption is over (or if it becomes the new normal). We all cope differently, but we can move forward together if the strong among us support the weak. We are a resilient people and adaptable to trying times, because this has always been the story of our lives. Let us strive to be the voice of our special needs community.•
HEARTSIGHT Christina Llanes Mabalot is physically blind from aniridia, but has a vision. She enjoys touching people's lives to bring out the best in them. "Heartsight" explains her ability to see with her heart. Christina earned her B.A. degree and Masters in Education from the University of the Philippines, Diliman, specializing in Early Intervention for the Blind. She later received Educational Leadership training through the Hilton-Perkins International Program in Massachusetts, then worked as consultant for programs for the VI Helen Keller International. She has championed Inclusive Education, Early Intervention, Capability Building and Disability Sensitivity programs. She was twice a winner in the International Speech contests of the Toastmasters International (District 75) and has been a professional inspirational and motivational speaker. Christina is blissfully married to Silver Mabalot, also physically impaired, her partner in advancing noble causes. Their children are Paulo and Jem, who has aniridia. Visit leadershiptovision.com