With a RARE family herself, Jolene MacDonald is a champion of digital accessibility. She has taken her artistic skillset and created a company focussed on accessibility and flexible working opportunities with a strong team of inclusion advocates

RARE entrepreneur series: meeting the beating hearts behind the rare brands

Accessibrand is an accessibility focused design and marketing agency based in Ontario, Canada that operates as a disabilities collective, with a team that has lived disability experience and provides flexible work. We offer all accessibility services as one company rather than having to deal with three or four, saving clients budget, time and reducing project stress. As a social enterprise, clients feel good when partnering with us and know that accessibility is never an afterthought like other agencies.

1.

What was the driving force in starting your own business in the rare disease space? Was there an unmet need you were responding to?

There are many factors to the driving force behind Accessibrand. The biggest was the birth of my youngest daughter, now 10, who has spondyloepiphyseal dysplasia congenita dwarfism (she also has Chiari type 1, mitral heart valve). I had been a graphic designer for over a decade before she was born and while advocating for her needs, I quickly realised how the design and marketing industry was lacking in digital accessibility.

During this time, I was diagnosed with HEDS (hypermobile Ehlers-Danlos syndrome), and my oldest daughter was diagnosed with postural tachycardia syndrome (PoTS) and mitral heart valve prolapse. I was the co-owner of another design agency and none of my clients took accessibility seriously, and I felt frustrated that I was creating projects that I knew people with disabilities wouldn’t be able to access or use.

As my health declined and I was overwhelmed with parenting and life I decided I needed to create something that worked for me and my family, but also something that benefited others dealing with medical issues or disability in their lives. I left my other business and tried working for someone else—but nothing was working or had purpose to me.

As I met other families dealing with similar health and medical issues, I quickly realised there were two unmet needs I could try to address:

• include accessibility from the beginning in all marketing (most companies fix it later)
  
• professionals impacted by disability needed flexible work and should be included as the experts at all stages of accessibility

2.

How does your business benefit the rare disease community?

At Accessibrand, we truly believe that strength comes from adversity. So much so, we have built our business model on this belief. We describe ourselves as a disability collective. All of our teammates have lived-disability-experience and are proud inclusion advocates. We know this makes us stronger as individuals and agile in business. So, in short, we benefit the rare disease community in a few ways—we offer flexible work and understand the challenges families face, as well as advocate and promote accessibility for all. Disability is a spectrum and should be made a priority for every organisation—from their marketing to their physical space AND their workforce. We are creating examples of how other employers can be if they look beyond the typical.

3.

What advice, if any, did you get when setting up your business? Has there been anyone in particular who has been pivotal in supporting your business?

I’ve been self-employed for a long time (18 years), so I’ve had a lot of advice over the years from many amazing mentors. Here are the biggest things I’ve learned and that I share with others:

• research, research, research! Get as much information as you can to ensure your ideas are strong and valid
• meet as many people as you can to discuss your ideas (but protect them with non-disclosure agreements)
• don’t be afraid of failure—don’t look at it as a negative thing but learning opportunities
• follow your gut. Trust your instincts and believe in yourself even on hard days

4.

How do you manage the demands of running a business with your own health needs, those of someone you care for, or those of your employees?

It’s not easy! However, I know that I can still make the schedule and deadlines for all projects since I am the owner. With the number of medical appointments we need in a year it would not even be possible to work for someone else. When I have days that are filled with fatigue, brain fog and chronic pain I try to delegate to my teammates and will reschedule appointments if need be. Working from home also allows me to take as many breaks as I need, and I can lie down. All these factors allow my anxiety to be more manageable as I control my own environment and life rather than others.

5.

What advice do you have for someone starting their own business?

Be prepared for a lot of hard work, but it is most rewarding when you are doing something you love. Seek out people smarter than you and accept criticism with an open mind. You can always learn and grow though these experiences. It will be more than just doing what you want to do; there are many things you won’t want to do as well!

6.

What are the most rewarding aspects of establishing and running your own business?

There are many. But I think knowing I can create ideas and projects that actually help others is one of the top. Flexibility for managing our family and medical needs. And that I am in control of my income as well, not someone else.

7.

What would you consider to be the greatest achievements of your business thus far?

I think for me, the most rewarding aspects are seeing the difference our team can make for the disability population and how changing stigmas and traditional work scenarios can improve the lives of so many people and their friends and family. What we do is seen by others and we can set those examples.

8.

What advice would you give someone considering working in the rare disease space?

It is a small world after all. Make connections and partnerships. Work together rather than apart. We are all looking for the same goals and together it can happen. Even when you are having hard times, try to look at the positive impacts you can make.

9.

What are your hopes for the future of your business?

My dream is to be able to reach as many people across the globe as possible through digital accessibility. Whether that is by me creating and providing education to other designers/marketers and then in turn they create accessible media, or by providing flexible employment to others impacted by disabilities internationally. Either way, my purpose is for impact—which will improve the lives of others to access communications equally. The world needs to see the value of our community. That we are not inspirational or disadvantaged—we just need to work differently. I want to know that the world that won’t judge my daughter based on her size but will value her for her capabilities, despite her conditions.

10.

If you hadn’t founded Accessibrand, what was Plan B?  What did your 10-year-old self want to be?

I always wanted to be an artist, from the time I can remember I could hold a pencil. In high school I found I had a passion for helping others and took courses with children with disabilities as well as volunteered. I had hoped to be an art therapist at the end of high school and work with children with disabilities of all kinds through art. I guess it happened in some way so many years later. I did go to school for fine art, then for graphic design, which is how I ended up in this career.