PWD-supportive laws insufficient as some groups grapple alone for survival

Story by Gab Imperial and Trizia Medina

Persons with rare and ‘invisible’ disabilities face yet another level of struggle as their conditions remain underrepresented, subjecting them to an added layer of suffering and lack of support. 

Although there are national legislations and initiatives in place to empower and support Persons With Disabilities, the government faces criticism for its weak implementation and worse, neglect of rare conditions.

Maria Mitchelle Aguedan, 30, also known as “Mitch AG,” is a team lead quality analyst (QA) and a digital creator who hosts a Spotify podcast entitled “May ADHD ka ba?” 

She also manages a Facebook group named “Adulting with ADHD PH” where she helps Filipino adults with attention deficit hyperactivity disorder (ADHD) navigate life. 

“ADHD involves ‘yung mabagal ‘yung development ng brain. For example, kung 30 years old ka, ‘yung executive function ng brain mo is comparable to an 18-year-old,” Mitch told Tinig ng Plaridel.

Mitch believes she had ADHD since childhood but was only clinically diagnosed in 2021. 

ADHD is one of the most common neurodevelopmental disorders of childhood. It is usually first diagnosed in toddlerhood and often lasts into adulthood.

People with ADHD may have trouble paying attention or controlling impulsive behaviors. They also have tendencies to be overly active.

Mitch also experiences emotional dysregulation, which causes significant changes in her mood or emotional lability. She shared that her mind is not mature enough to decide on her own and she’s not very good with crowds as her energy offends other people.

“I cannot read the room. I cannot read social cues,” Mitch said.

Persistent struggles

While her academic excellence earned her a seat in the star section in high school, her classmates instead picked on her disability. The bullying persisted even in her college years.

Her situation was no different after she graduated from marketing and started working in 2011.

“Hirap [ako] to mingle [with other people], makitao in a way. Mayro’n ako laging sariling mundo, parang hirap na hirap akong i-mingle sarili ko. That’s why I mainly chose to work from home or freelance,” Mitch shared.

In 2022, she found contentment in a company where clients respected her. In just three months, she was promoted to be a QA.

While she loved the environment at work, she couldn’t say the same about her family, who mocked her disability instead of embracing it, especially with her being the eldest among the cousins.

“To them, if you’re the panganay, you have to be this and that. Since ‘di ako matalino noon, the second eldest cousin became the trophy. I became the center of ridicule…I was not protected by my own parents and that’s a huge thing,” Mitch said.

Meanwhile, she continues to struggle with ADHD physically, mentally, emotionally and socially.

“I feel like I have a dragon to tame everyday. Everyday is a battle. I’d rather sleep than be angry,” Mitch said.

Mitch was diagnosed with depression after her pregnancy. In November 2022, her diagnosis of depression was eventually changed to bipolar disorder, mainly because of childhood trauma and neglect.

Mitch also thinks the national government lacks PWD support. In a talk she attended, P3PWD party-list representative Rowena Guanzon recounted how the Senate dismissed her request for additional funding for people with psychosocial disabilities – an initiative granting financial aid for their special needs.

Moreover, medicine for persons with ADHD, including antidepressants and mood stabilizers, is expensive. Mitch spends around ?10,000 monthly on meds alone. Plus, the severe shortage of psychiatrists in the Philippines makes it difficult for her to secure appointments and avail mental health services. 

Lack of representation

Many other PWDs also push for inclusivity. Joining Mitch in this call are people like Betsy who have physical needs for mobility.

Elizabeth S. Calaycay-Doco, P.T.R.P., M.P.A., a.k.a Betsy, 57, is a physical therapist in a government hospital. In the past, she treated people with neuromuscular conditions. One of which is muscular dystrophy – a condition she and her siblings also have. 

Muscular dystrophy is a genetic condition mainly caused by a protein deficiency in the muscles  called dystrophin, which prevents the muscles from working properly, eventually weakening them. 

Usually, its symptoms may be recognized when a four or five-year-old child faces difficulty to stand from low chairs or floors – or shows peculiar ways to do so.

In her work, Betsy was able to treat patients with the Duchenne muscular dystrophy, one of its most common types where most kids don’t live to see their 20th birthday. 

She rarely had patients with the limb-girdle muscular dystrophy to give Physical Therapy treatment, the case similar to hers. This kind involves muscle weakness or “wasting” in the limb-girdle area, particularly the hip and shoulder areas, only where voluntary muscles are 

Betsy mentioned that such low rates of appearance in treatment facilities may be attributed to social stigma, economic reasons and lack of awareness on managing muscular dystrophy. 

With the lack of global statistics on the condition, the Muscular Dystrophy Association of the Philippines estimates that there is around 0.0002% or 200 Filipinos with muscular dystrophy. Betsy is a member of the said association.

Despite the low numbers, Betsy shared that her condition has not been locally classified as a rare disability.

Furthermore, Betsy is not free from workplace discrimination. She said that she experienced unfair treatment from her superior due to her condition.

“The challenge would be the usual: treating me differently, not looking at my potential, knowing that nauna pa ako sa kanila dito, but I just look patiently and time will just tell […] to say that they are wrong,” Betsy said.

Lackluster efforts

Currently, the government provides support through PhilHealth packages which include health insurance benefit services among the communities. There are also laws like the RA 11223 or the Universal Health Care Act and RA 11228 which mandates that all PWDs should be covered by PhilHealth.  

However, Betsy believes that the Department of Health is not doing its best, especially in attending to PWDs whose conditions are yet to gain more recognition.

“Hindi dapat sila selective; hindi dapat sila nag-e-exclude. Dapat inclusive ang kanilang pananaw. They have to go down to the grounds and talk to us,” Betsy said.

Also a member of the Philippine Government Employees’ Association, Betsy actively calls on the government to acknowledge their disability as a rare disease and to engage in community-based rehabilitation. 

The latter involves empowering communities through capacity-building and advocacies, which can also be anchored on the existing laws for PWDs.

“Let’s not lose hope. Let’s work as one. And for the government, hear us out. As [someone with] muscular dystrophy, we do not know when we’ll see the light of day when there is a cure, but give us a quality of life,” Betsy urged.

Meanwhile, Mitch believes that a more inclusive environment for persons with disabilities also means a society that has more empathy for people like them.