Empowerment and inclusion advocate Marilena De Costa draws inspiration from the metamorphosis of a butterfly, a symbol that mirrors her life's mission. Transforming her personal struggle with Multiple Sclerosis (MS) into a movement for inclusion and self-discovery, Marilena has spent nearly two decades reshaping perceptions of disability, equity, and diversity in the UAE. 'Everyone, regardless of ability, deserves the chance to thrive,' she asserts, embodying a message of strength and resilience.

'We are not always seen,' she reflects. Raised in southern Italy in a middle-class family, Marilena's early inclination towards service was sparked by her aunt, who lived with MS and used a wheelchair. This connection to the disability community deepened when Marilena, along with other family members, was diagnosed with MS at 23. Despite this life-changing diagnosis, she became a prominent advocate for the National Multiple Sclerosis Society in the UAE, committed to empowering others with MS.

'Living with Multiple Sclerosis can be debilitating,' Marilena explains. 'It's like an exposed electric wire. The disease impacts the nervous system, potentially causing paralysis, vision issues, and cognitive challenges. Yet, people like me often conceal our struggles. We're not always visible.'

Although her formal training is in law, Marilena's true calling emerged during her postgraduate studies in disability rights in Ireland. Her work with disability communities in Europe brought her fulfillment, and upon moving to the UAE 15 years ago, she identified a pressing need for advocacy. 'There was no formal definition of 'people of determination' in the UAE, nor a legislative framework for disability rights,' she recalls. Despite these challenges, she persisted, eventually securing a grant in 2019 from Ma'an, Abu Dhabi's Authority of Social Contribution, a pivotal moment in her journey towards sustainable social impact.

Her social enterprise, The Butterfly, is designed to foster a society where people of determination can thrive. Named to symbolize transformation, The Butterfly embodies Marilena's belief that even minor changes—like the flutter of a butterfly's wings—can generate significant ripple effects. 'The concept is that one small change can lead to a big difference, creating waves of change that extend far and wide,' she elaborates.

Since its inception, The Butterfly has expanded, serving over 500 families across Abu Dhabi, Dubai, Sharjah, and Al Ain. In 2021, Marilena launched the Inclusive Employment Ecosystem, the UAE's first network dedicated to inclusive workplace practices. Backed by major companies like Standard Chartered Bank and Siemens Energy, the network has grown from three founding members to 14.

'Our focus on inclusive employment involves training companies to embrace disability inclusion,' Marilena explains. 'It's not that companies don't want to hire people of determination—they often lack the knowledge on how to begin. Our role is to guide them, from securing leadership commitment to refining recruitment practices.'

Beyond awareness, Marilena's initiatives offer tangible opportunities for people of determination. Through The Butterfly, many individuals have found meaningful employment, including Arianne A. Lagdamat, a 35-year-old hearing-impaired woman who secured a position at Siemens Energy. 'I'm deeply thankful for this job opportunity, which I prayed for, and feel motivated and fulfilled working with such a respectful and supportive team. Despite my hearing impairment, my colleagues and managers have been incredibly considerate, assisting me in overcoming challenges and growing in my role,' she shares.

Siemens Energy is one of the founding members of the Inclusive Employment Ecosystem, managed by The Butterfly. 'The growth of the Ecosystem has been remarkable. Our goal for this year was to reach 10 members, and we're now at 12. The contributions from each member provide valuable learning opportunities for all,' says Folrian Koemm, Global Head of Legal & Compliance Operations.

Abdullah Alaydaroos, a young Emirati and dedicated ambassador for The Butterfly over the past three years, is set to begin his full-time career with Aldar after interning there through The Butterfly's network. Currently pursuing a degree in International Relations at Zayed University, Abdullah is expected to graduate this December, marking the start of his professional journey at Aldar.

'We maintain a dashboard of CVs for people of determination, making it simpler for companies to find qualified candidates,' Marilena explains. 'Our aim is to build a more inclusive society, one job at a time.'

Marilena's unwavering dedication has garnered recognition. In 2010, she was honored by the Synergos Rockefeller Foundation as a Social Innovator in the Arab World, endorsed by the United Nations Special Rapporteur. More recently, she was celebrated for her role in shaping the Abu Dhabi Disability Strategy 2020-2024 and named a Social Entrepreneur by Ma'an, the UAE's Authority for Social Contribution. Her influence has also led her to join the UN's ILO Global Business Disability Network, where she collaborates on global disability advocacy and inclusion efforts.

However, the journey has been fraught with challenges. For three years, Marilena worked as a volunteer, facing financial constraints to keep her vision alive. 'I cried many times because no one understood what I was trying to achieve. But if you're passionate, you find a way,' she reflects. 'It's been a challenging journey, but the rewards are worth it.'

Today, The Butterfly is a thriving force for change. 'What we've accomplished in just a few years is remarkable,' she says with pride. 'We're impacting over 500 parents, 14 companies, and we're a central force in the Abu Dhabi disability strategy.'

Looking ahead, Marilena's vision is clear: to ensure the inclusion of people of determination is not just a trend, but a lasting movement. 'We've built something sustainable,' she says. 'And I hope it continues to grow, inspiring others to join us on this journey.' Her advice for those passionate about creating change is straightforward: 'Keep going. Don't let setbacks stop you. Change comes slowly, but it does come.'

The Butterfly will participate in the UN ILO Global Business Disability Network Annual Conference in Geneva on November 27th and 28th, where they will represent and present progress on disability initiatives from the Arab states.

Just as a butterfly's wings create ripples, Marilena's work demonstrates that small actions can make a profound impact—changing the world, one flutter at a time.

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