MS expert: Lawmakers must put disability higher on the agenda


This article is part of our special report The Brain and Multiple Sclerosis.

SPECIAL REPORT / Every single person in the EU will have a friend, a relative, a neighbour, an employer or employee who will be affected by a disability at some point in their lifetime. Therefore, EU politicians need to put disability higher on the agenda, says Emma Rogan.

Emma Rogan is project coordinator for the European Multiple Sclerosis Platform (EMSP) which represents 600,000 people with multiple sclerosis in Europe.

She spoke to EURACTIV's Henriette Jacobsen.

What are some of the things you need to change as an employer if you have someone with multiple sclerosis working for you or if you are considering hiring a person with multiple sclerosis?

People who are diagnosed with multiple sclerosis have different symptoms that vary in type as well as severity (physical and cognitive). The fluctuating nature of the condition can be a challenge but it can be managed. Fatigue is a symptom for many people with multiple sclerosis, me included. However, a planned rest period during the day means I continue my work and complete tasks.

To facilitate this, my employer last year, MS Ireland, put a reclining chair in the building. For others it’s about having their lunch hours extended so they go home and take a rest. Many businesses are providing quiet spaces for employees to take time out from their schedule and to regenerate. It makes business sense to have well-rested, energetic employees.

What about the option of working from home once in a while?

With modern technology, working from home has become more of an option for businesses. Where possible, flexibility has the potential to affect a person’s workday for the better. Innovation and creativity applies to every aspect of life and yet when it comes to someone having a different need, for some reason it is not considered. However, working from home is an approach for many, particularly for people with multiple sclerosis to manage their work.

Where relevant, it makes sense to apply the same innovation to the working lives of people with disabilities. Restoring confidence by adapting to circumstances empowers people to rebuild and/or maintain their work life for longer. People don’t want charity, they want opportunity to work.

Do you have the impression that it’s difficult for people with multiple sclerosis to negotiate these changes with their employer?

It can be very difficult. Negotiations are about working things out and bringing about a win/win situation for all parties involved. If there is a change in the person’s circumstance, knowing the employer is open to listen, to discuss options, will make all the difference. Being diagnosed with a chronic neurological condition such as multiple sclerosis can have serious implications for a person’s mental health as they process the change in life. This can be very difficult to deal with.

Difficulties arise when people are working and then diagnosed with multiple sclerosis. They may have to hide their symptoms for fear of losing their job. This has happened where the employer jumps to a conclusion without ever finding out how multiple sclerosis is affecting their employee. Decisions are then based on prejudice and are, quite often, not lawful. Most people with multiple sclerosis remain capable in terms of work and most adaptations don’t cost anything financially.

However, when employers and employees talk through the changing needs, it is then they can figure out a solution that keeps the person with multiple sclerosis employed and the business retains a competent member of staff. It’s a success on all fronts.

How should it be communicated to an employer that maybe hiring someone with a disability, for example multiple sclerosis wouldn’t mean changing many things in the workplace?

Awareness and information are fundamental to understanding the needs of people with disabilities. Support is available from different multiple sclerosis organisation in every country.

The EMSP is currently developing a project, Believe and Achieve, to provide young adults with multiple sclerosis with the opportunity for internships with partnering businesses and organisations. EMSP will provide support and information to ensure success for all involved. There are thousands of young, well-educated adults who have the passion and capabilities to work; all they need is the purpose, an opportunity to become great employees. Their symptoms might need some adaptations but with the right opportunities and guidance, together you make the most of their skills.

A business owner will give someone the opportunity to get work, helping them learn new skills and they give back in the work they do. When word gets out that you are an employer who takes such considerations, it’s great for business and it opens up a whole new market.

Perhaps I won’t convince someone who does not see the possibilities. However, by giving people the chance to show what they can do is life changing for all involved. I never imagined that aged 27 I would be diagnosed with multiple sclerosis nor need the support to get back to my life and fulfilling my ambitions. It was only when I saw an opportunity and had the chance to make the most of my education and skills, that I re-discovered my potential.

When an organisation gives someone an opportunity and adds to the diversity and skill-set of the workplace, everyone benefits. Diversity brings creativity and a new perspective that enhances the workplace. It’s about seeing the advantages of holding on to a member of staff or employing someone who is passionate and capable.

There have been other disability groups who have called for quotas for companies or targets for job centres when it comes to employment of people with disabilities. What is your opinion on this?

When it comes to quotas I refer to the example of the number of women in politics and the under-representation of half the population. As long as there isn’t an equal playing field, there needs to be quotas.

When it comes to people with disabilities and quotas for employment, I think in general terms they are useful. However, there must be processes in place to follow through. If someone with a disability has specific experience, qualifications and skills in one area but is offered a job which is a complete mismatch no-one is going to benefit. There has to be something in the process that equips the staff in job centres to follow through a process with the person, it has to be a conversation. It can’t just be “Here’s a company with a position for a person with a disability and here’s the person with the disability.” Everything needs to be discussed to ensure respect and dignity for the person and there needs to be a match.

With the job centres, yes, I think targets for employing people with disabilities are a good idea, but the processes and evaluation need to be there to match. People are always saying to be that I don’t look sick or disabled. Just because we have a label for my chronic condition, doesn’t mean that I’m going to fit in with someone’s idea of what I should be doing. I remain a woman with strong career ambitions; multiple sclerosis doesn’t mean giving up on my ambitions, just rethinking how I can achieve them.

If you were an EU politician, let’s say a member of the European Parliament, what would be the first thing you would do or change for people living with multiple sclerosis in the EU?

What a wonderful ambition! The first thing I would change would be to open up the conversation and involve everyone. We don’t talk openly about disability or the discussions are limited to a certain group of people with disabilities and a certain number of people who focus on the disability issues. This is a subject for every person reading this.

Every single one of us in the EU will have a friend, a relative, a neighbour, an employer or employee who will be affected by a disability. It is part of life yet we treat it as though it was an exception. The only exception is the old-fashioned attitudes that are formed when people don’t have information or are dismissive. When we talk about chronic illness and disability people living with the conditions need to be at every stage.

It absolutely needs to be higher on the agenda. More than one in four people will be affected by a disability in their lifetime. We have millions of people in the EU with neurological conditions such as multiple sclerosis, Alzheimer’s and Parkinson’s disease and the numbers are growing. The medical expenses and our pharmaceutical costs are getting higher. What is the one thing we all have that makes us capable taking part in this process? Our brains. Yet, we still don’t place enough on the importance of taking care of our brain, the neurological side of our life and have to be jolted into reacting.

But one thing I love about being part of the EU is the idea that we can get everyone together and we can talk, discuss, plan, be creative and innovative and bring about social change.

At the moment, many policies are also short-term, especially right now when everyone is afraid of taking risks. What impact does this have?

I think it’s always like that. If you are an elected representative then you have people who have voted for you and you are going to make sure that you keep them happy. This is of course, how the system works. But in the EU Parliament, the horizon is bigger and the possibilities endless. I think the idea of the EU community is to take the local issues to the international level, collaborate with others working on the same issues and implement changes together to benefit the whole of the EU population.

There are all these wonderful strategies and targets such as Europe 2020. By taking a reasoned approach it is possible that we will have a sustainable and inclusive economy and community. While we might have different cultures, most people want to work, to have family and friends, to be safe, to have their voices heard and to live a life of health, wealth and happiness. Much of these are an adult’s responsibility but it is the policy and decision makers who can ensure the right environment for their people to have these outcomes.

The European Parliament elections are coming up in May. Thinking in a cynical way, could it be about somehow letting politicians know that there are a huge number of voters with disabilities that they can appeal to, and letting the people with disabilities know that they need to vote because they will be heard?

Absolutely, they will be heard. If you’re going to ignore a large percentage of the population by only including them when you want their vote, people are going to respond in the same way and ignore MEPs at election time. It’s part of democracy to listen to your voters, but what’s happening is that democracy seems to only matter when a politician wants a vote.

For me, it’s not just about politicians announcing and deciding. When people with expert experience, people who live with conditions such as multiple sclerosis are involved at every level in working out policy, the results will be relevant and more sustainable. We need people with disabilities to speak out and take part and we need the others at the table to make room. This is not only possible, it is necessary for the sustainability of the Union. It is this that will make the difference to all of us, whether we’re living with a disability or not.

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