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The gang (well Michelle and Jack) goes abroad! From Brussels, Michelle interviews Alejandro Moledo the Deputy Director and Head of Policy of the European Disability Forum. Then Jack conducts out spotlight interview from a hotel lobby in Spain, where he speaks Mercedes Lopez Miranda about her experiences being a person with a disability in Europe.
To learn more about the work the European Disability Forum does visit https://www.edf-feph.org/
To view the full transcript for this episode visit https://www.ndrn.org/resource/ndr-june24/
Stephanie Flynt:
What’s your cold open going to be about?
Michelle Bishop:
It’s probably going to be that now.
Jack Rosen:
Probably that. I don’t know. I’m tired.
Michelle Bishop:
Jack, I’ve never seen you so full of life and vivacious.
Jack Rosen:
Yeah, I don’t know. It’s too hot out to podcast.
Michelle Bishop:
Too hot to pod?
Hey, hey, welcome back to National Disability Radio. It is a little bit hot in D.C. right now and we are all a little bit blah, but I am one of your hosts, Michelle Bishop, the voter access and engagement manager at NDRN.
Stephanie Flynt:
And I’m Stephanie Flynt McEben, public policy analyst at NDRN, and please send coffee gift cards if you feel so inclined. You’ve got our little electronic email address. Okay, thanks.
Raquel Rosa:
And this is Raquel Rosa, your community relations specialist at NDRN and your final third of podcast hostesses.
Michelle Bishop:
Hey, Stephanie is fueled entirely by coffees. You know how most people are 75% water or whatever? Stephanie is 75% iced coffee.
Stephanie Flynt:
I am, yes. And I almost hate to say this because if people find out there might be a supply shortage, but they sell iced coffee in cartons and I was last summer years old when I found that out and it’s been life-changing.
Michelle Bishop:
You drink cartons of coffee?
Stephanie Flynt:
They have iced coffee cartons, like half gallons.
Michelle Bishop:
You’re telling me you drink a half gallon of coffee on a daily basis?
Stephanie Flynt:
Not a daily basis.
Michelle Bishop:
That’s a little scary.
Stephanie Flynt:
Not on a daily basis.
Michelle Bishop:
Speaking of people who are energized and ready to go, where is our producer at?
Jack Rosen:
Oh, I was sending an email asking them to turn up the AC. Hi, producer Jack Rosen here. That’s all I got. I’m genuinely miserable right now.
Michelle Bishop:
This is an enthusiastic episode we have for you all.
Stephanie Flynt:
Very enthusiastic.
Jack Rosen:
Yes. To be clear, I’m miserable about the heat, but I’m excited for our guests on today’s episode. Michelle, you want to tell the people who we have on?
Michelle Bishop:
So I recently had the honor of traveling to Brussels, the home of the European Union, to bring you our very first international episode. We don’t have applause, so now we have to start doing it ourselves. I actually got to visit the European Disability Forum, or EDF. They’re an umbrella organization of persons with disabilities that defend the interest of over 100 million people with disabilities in Europe. As an independent nongovernmental organization that brings together representative organizations of persons with disabilities from across Europe, they’re run by people with disabilities and their families and they’re proud to be a strong united voice of persons with disabilities in Europe. EDF envisions a Europe where persons with disabilities are fully included in society on an equal basis with others. Does that sound familiar? They work to ensure full inclusion in society of persons with disabilities and access to their human rights through active involvement in policy development and implementation and monitoring of the UN Convention on the rights of persons with disabilities in Europe.
Stephanie Flynt:
That’s cool. Oh my goodness. Excited about the interview coming up next that you’re conducting, Michelle. Is that correct?
Michelle Bishop:
Are you all jealous? Are you so jealous?
Stephanie Flynt:
I am jealous, yes. I’ve never been abroad before, so I’m definitely jealous.
Michelle Bishop:
Whoa. We’re going to have to do a second international episode and take Stephanie abroad.
Stephanie Flynt:
Yes.
Michelle Bishop:
I’m in favor. Also, you should be jealous. It was in Brussels, the waffles alone and the fries were worth it.
Stephanie Flynt:
Oh my gosh. Now I want french fries. Thanks.
Michelle Bishop:
I went over to EDF’s offices and I got to meet with Alejandro Moledo, who’s the deputy director and head of policy. Alejandro leads and coordinates EDF’s advocacy and policy work at the EU level and supports the work of the European Parliament Disability Intergroup. Among other areas, Alejandro has developed policy positions and recommendations regarding political participation of persons with disabilities, accessible information and communication technologies, assistive technologies, and different standardization activities. He previously worked as a communication officer within the Parliament of the Valencia region as a journalist in digital media and a communication agency in Andorra and in a public affairs company in Madrid. He actually has an MA in political and corporate communication from the University of Navarra, Spain and George Washington University, and a BA in journalism from the University of Valencia with a year actually at York University in Canada. And I will warn you guys in advance that Alejandro and I had started having a really broad conversation about disability rights in US and in Europe, but they’re having elections coming up too and as soon as we got into elections, it got election geeky real fast.
Stephanie Flynt:
I’m here for it.
Michelle Bishop:
Alejandro, thank you so much for sitting down with me today. I just got into Brussels this morning, but I was so excited to sit down and have this conversation with you. Most of our listeners are American. They know a lot about disability rights in the states, but I don’t know if they know that much about the European Disability Forum, and I was wondering if you could start off by just telling us a little bit, a bit about that and what you do.
Alejandro Moledo:
Sure, thank you. Thank you so much for having me in your podcast. So the European Disability Forum is an organization that brings together the European disability movement. We are an umbrella organization and our members are those European NGOs that represent different disability groups such as the European Blind Union, the European Union of the Deaf, Autism Europe, Inclusion Europe, people with intellectual disabilities, and also those organizations at national level that represent the disability community. And we work very closely with the European Union institutions, as we are an advocacy organization that promotes the rights of persons with disabilities, and we do so by involving all our members in the policy-making and trying to influence the laws that are being adopted at EU level. And on top of that, we obviously work with our members in building the capacity of the movement and promoting the rights of persons with disabilities. So that would be more or less we do.
Michelle Bishop:
So we’re actually not that different. I’m with the National Disability Rights Network in the States and we are a national membership association, so I’m based in D.C. but our member organizations, the disability rights organizations are in every US state and territory, and we’re sort of their association that supports the work that they do and we work on policy at the national level. So we’re actually not that different. In the United States, we rely so much on the Americans with Disabilities Act. For the rights of people with disabilities, to protect their rights, it’s such a big landmark piece of civil rights legislation. There’s so much stuff in it, good stuff. There’s architectural access stuff, that places of public accommodation have to be accessible, but it’s also got non-discrimination and employment and access to programs and all those sorts of things. I’m wondering what that looks like in Europe. How are the rights of people with disabilities protected?
Alejandro Moledo:
Well, in Europe, finally we have the UN Convention on the rights of persons with disabilities ratified by all member states, and not only by all member states, but also by the European Union as a supranational organization. So this kind of universal ratification of the convention for us has been really a driving force for disability rights. And the thing is that, and you know very well, the convention was very much inspired by the Americans Disabilities Act and also from Europe, we also look at your good practices and good legislation also as a food for thought or inspiration for campaigns and advocacy that we do here in Europe. But when it comes to specific policies, which I guess is similar to within the US, but it’s complicated because we have the EU as having certain competencies in which the EU basically is the ruler, such as, for example, internal market. We have a single market in the EU and therefore, for example, laws concerning accessibility can be introduced and have been introduced by the European Union, transport services as well.
But then when it comes to other areas such as let’s say employment policies, education, in this case the member state has the competence and the EU has a supportive kind of role. And in this supportive role, obviously we also have certain room for improvements and ideas that can guarantee that member state exchange these good practices and can advance on the rights of persons with disabilities in different areas. So we work with this kind of complex policy system, but with the idea that every right that we have been achieving at EU level will come even if it will take time at national level, regional level, and local level in the coming years. EDF was created in 1996, and in 1997 the Amsterdam Treaty of the EU finally included disability in the article on non-discrimination and since then, we’ve seen how the EU has increasingly become more present in the everyday life of all citizens, but also on persons with disabilities. So we work with that scenario and trying to get the best out of it.
Michelle Bishop:
That’s really fascinating to me and I bet it is for a lot of our listeners because it sounds really similar to the United States in that we do have some overarching federal policy especially that protects the rates of people with disabilities, but we’re very much founded in this notion of states’ rights and the states having a lot of independence. And one of the things we often lament is what it looks like to be a person with a disability can often depend on where you live in the United States. The policies and the programs can look very different. How does that work here? Do the nations that are part of the European Union work together well on these issues? Is it complex? What does that look like in terms of someone who’s looking at policy around the European Union every day?
Alejandro Moledo:
Well, it really depends on the country and it really depends on the policy area that we are talking about. We often get the question like which is the best EU member state when it comes to the rights of persons with disabilities? And that’s an impossible question to answer because it really depends on how the country has transposed certain EU legislation because when we adopt, for example, a European directive, then member states have certain room for interpretation, particularly on how they want to fulfill the obligations of such European law. In this possibility, obviously from EDF, we prepare toolkits, guiding materials for our members to take this opportunity to advance on the rights of persons with disabilities. I’ll give you an example. Well, recently, back in 2019, we had the first ever horizontal legislation on accessibility, the European Accessibility Act, very important for accessibility in Europe.
Finally, we kind of catch up with the US when it comes to accessibility. And in this legislation we made sure that the European emergency number, which in our case is the 112, will become accessible for persons with disabilities. But it does not include national emergency numbers or other national numbers which are of interest and importance for persons with disabilities as well, so in our toolkit, in our guidance to our members, we recommended, “When you engage in discussions with your government, make sure to propose that in the national law, you also include the national emergency numbers.” That is how we can advance on accessibility, taking the European Union as a basis and then going forward and beyond. So the member states do cooperate well when it comes to certain areas, accessibility is the one that I just mentioned that I think is a good example.
In other cases, it really depends on the system they have in place. Because we have different social protection system and different, for example, with voting rights, which I guess we will talk in a minute, it’s very different across member states. So when countries do have similarities, they use a good space to share those good practices. And we do so at the disability community level, but also promoting that the EU ensure this kind of space for member states to discuss. We have the European Disability Strategy, and one of the flagship initiative of the strategy has been the creation of an expert group called the Disability Platform in which EDF and many of our members are there as civil society members. But also the CRPD, the convention of focal points of the EU and all member states. So this is a good forum for them to exchange on different policy areas and for us also to intervene and have our say on the different discussions and the different actions that this strategy was promising.
Michelle Bishop:
Okay. You mentioned voting rights and my face automatically lit up. As you know, back in the states, voting rights is my thing. I work on protecting and expanding all-site access to the vote for people with disabilities because our electoral process unfortunately is not yet fully accessible. We’re working on it. We have good federal law in place, actually. The Help America Vote Act of 2002 and the Americans with Disabilities Act actually applies, so we’re working on it. We’re getting there. I know there’s elections coming up in Europe as well because we’re about to go into a presidential election. It’s charging at us at full speed. There’s primaries going on as we record. So talk to me about elections in Europe and what that looks like for people with disabilities.
Alejandro Moledo:
Well, this is also a policy campaign that excites me very much and I’m also working very intensively on. In Europe, as I mentioned, we have many different voting systems, first of all, so the different voting tradition makes it difficult for having a homogeneous or kind of harmonized similar way of voting in all of the EU. We have certain member states in which we have closed lists, so basically the voter just picks a ballot and that’s it. We have many member states in which voters can cast a preferential vote. And we have for example, one member state, Estonia, in which voters can vote as an alternative means of voting by internet through our website, which is accessible by the way, and our members love it. And so the EU itself, as you know, the democratic institution that we have is the European Parliament. This is the one that represents European citizens.
Then the European Commission would be our government, and then the Council of the EU is institution that represents our national governments. But we do not elect the president of the European Commission or the commissioner, which would be the ministers, or the representatives in the council because these are the ministers at national level, so people elect them through their national elections. So the one that we elect directly as citizens is the European Parliament, and here the European Union has its law back in 1976. And obviously this was before the ratification, even before the drafting of The UN Convention on the Rights of Persons with Disabilities, and it includes very minimum set of rules. So we can say even if we talk about the European elections, we have actually de facto 27 different elections. And within this very diverse system in Europe, we use this kind of motto like united in diversity because even if we are very diverse, we elect the European Parliament. This poses challenges for the participation of persons with disabilities in political life.
And here at EDF, we published back in 2022 a research report. Every year we publish this series of human rights report, and that year in 2022 was the human rights report on political participation in which we kind of big dig deeper into the political or electoral rights of persons with disabilities and we make maps comparing the situation and data comparing the situation across the 27 member states. And we brought cases that really brought substantial change at national level, so I recommend your listeners to take a look at this report, which is really, really interesting. And the good thing is that it is getting outdated, which is great because that means that there is progress. I will tell you in a moment.
So in this report, we kind of divided the barriers into the legal barriers and the practical barriers because still today, there are 12 member states in which mostly people with intellectual and psychosocial disabilities that are under certain substituted decision-making regime like legal guardianship, for example, which are totally or partially incapacitated can be deprived of the right to vote. Among these 12 member states in which people with disabilities can be deprived the right to vote, in six of them if you are placed under total partial guardianship, you automatically lose your voting rights and obviously your rights to stand as candidate. And fortunately, we’ve seen progress.
Some months ago we got Slovenia changing their national law, and for the first time people placed under their guardianship will vote in the upcoming European elections in June. Last year, we had Luxembourg also changing their laws and ensuring that all persons with disabilities without exception can vote and stand as candidate to the European Parliament. So now all in all, we have 15 member states that uphold the right to vote for persons with disabilities without exception. However, if you look at the right to stand as candidate, the funny thing is that this number is lower. So instead of 15, we have only 10 countries that uphold the right to stand for office, and this still keeps alive this unfortunate double standard for persons with disabilities.
We cannot be active and political citizens, and we hope that member states will continue changing their national laws at these remaining 12 countries. From the European Union along with the European Parliament, we have proposed a new electoral law that ensures the right to vote regardless of legal capacity. But unfortunately the electoral law is a competence of the council, so the institution that I referred before, the one that represents our national government, and they are not really willing to have a new EU electoral law. Not because of the disability provisions in this law, but also because of other controversial aspects that member states are not willing to accept because elections are very sensitive and some of them, they don’t want Brussels to tell them how they arrange their elections.
Michelle Bishop:
That is shockingly similar to how we do the work in the states where elections are. Very few of our election laws are federal laws. Most of them are state laws and a lot of the policies are even set at the county level within the states. They’re very local and they absolutely do not want to be told how to run their elections, and they all do it a little bit differently. We also are working on this issue of people with disabilities losing the right to vote under guardianship. The majority of states in the US have some sort of policy in place where that can happen. In a number of them, a determination has to be made by the judge as to whether or not the person will lose the right to vote, but we do also have some states that automatically remove the right to vote based on guardianship.
So if you’re interested I can send you, the US Department of Justice just updated their guidance recently on the Americans with Disabilities Act, and it says in there explicitly that you cannot categorically disenfranchise voters with disabilities based on guardianship. And that’s I think the first time we’ve had something that strong in writing that talks about the fact that you can’t just automatically remove a right to vote from a person with disability based on guardianship, so we’re excited about that. I’m really interested in this report. Did you say our listeners can snag it online if they want to take a look?
Alejandro Moledo:
Yeah, definitely. If you just look for EDF Human Rights Report, political participation, you’ll find it. We have it in accessible format, ebook format as well. And we are updating the web page with the recent changes that we are aware of at national level because the report, unfortunately we cannot change it, but it’s really good because there is nothing like naming and shaming or comparing neighbors. So in Europe, when we have these maps with different colors, then suddenly I received an email from a national official telling us like, “Hey, please, we just changed the law. Can you change the color of our country in your report?” “Sorry, it’s in PDF. We can’t do that.” But we are making these kind of updates in the website of EDF. The European Commission made a recommendation in which they also recommended, so it’s not a binding document, but the commission can issue recommendations to member states, and the commission issued that recommendation proposing or suggesting to member state to remove the automatic deprivation of voting rights.
But they added, “Without redress mechanism or individual assessment,” something like that. So basically what they were saying is that it is bad to have this automatic deprivation voting rights, but you can have it on an individual basis. And from our perspective, the UN Convention on the Rights of Persons with Disabilities is very clear, everyone should have the same electoral rights. So we felt that the commission, it was not so ambitious or as ambitious as we would have liked to be. And also concerning the elections, the commission issued at the same time or a week before, I believe, a guide on inclusive electoral practices for persons with disabilities, which is very interesting because it brings specific cases and annexes in which you can look at different methods that the member states have put in place to ensure accessibility of the elections.
Many of them were, I must say, also taken from our report, which is great because that means that the commission is also looking at paying attention the inputs that we send them. And we cooperate very well with them because these are what we were just discussing, is the legal barriers. So people with disabilities that cannot simply cannot enjoy their political rights, but many more or millions I would say do not engage in the elections because of different practical barriers. And here when it comes accessibility, here when it comes reasonable accommodation, the right to choose to freely choose your personal assistant to assist you in casting the vote, which in two member states this is not possible. In two member states, you can only be assisted by an election official, which is really explicitly contradicting the UN Convention because you basically need to reveal your vote to a stranger.
And this obviously can be very detrimental in small and big communities, there is no difference. Everyone should have the right to freely choose the assistants to cast their vote. And when it comes to accessibility, this guide or our report can be a good source of inspiration because we have so many ways of voting in Europe. So I mentioned we have the internet voting in Estonia. In Belgium and I think in Bulgaria, we have voting machines which are not accessible. In countries in which there is a closed lid, have different ways of making it accessible like braille envelopes. There is countries in which you even need to hand write the name of the candidate, which is obviously posing many difficulties for persons with disabilities. There is a country, Romania, in which you need to vote with a specific booklet and using stamps.
So there are really a huge diversity of voting cultures in Europe, but what is really interesting of our report and this guide is that it shows that when electoral authorities cooperate with disability organizations, they find solutions. And we’ve seen that, for example, in the Netherlands, in Sweden, in Luxembourg, for example, when electoral authorities sit down with our members and with specific OPDs representing the disability groups and say, “Okay, how we vote here? Okay, we vote like this. How we can maximize accessibility of these specific ballot paper that we use. Okay, maybe we can enlarge the font size. Okay, maybe we can include pictograms. Maybe we can have a QR code that could assist blind people to get the information in an accessible web document.” So there are different solutions, and I think the key message from our report was that the cooperation between electoral authorities and the disability community is crucial to really remove these barriers for electoral rights. Sorry, I get too excited with this.
Michelle Bishop:
You and I both get too excited talking about voting and elections. I don’t know if they knew what they were getting into when they paired us together for this episode. But you brought up something I’m also really passionate about, that in the US you do have the right to the assistant of your choice, and that is protected by federal law. And I just think that’s a really important feature of elections because you should be able to get an election worker to assist you if you don’t have someone, but you should be able to ask someone that you trust to mark your ballot in the way that you want it marked, and you shouldn’t have to disclose that information to a stranger or to someone to whom you don’t have that trust relationship. But I’m really excited to dive into this report.
I love this idea of these maps and maybe generating some healthy competition among the different countries. I’d love to do that with the states in the US. We might steal that idea from you all. We’ll absolutely give you credit if we take it. I don’t want to take up too much of your day. I just want to say thank you so much for sitting down with me today. This was really interesting. It surprised me actually how many issues we had in common and how many things that we’re working on that you’re working on as well. It strikes me that the disability rights movement as a civil and human rights movement is just truly global, and we’re facing a lot of the same struggles all over the world and that’s hard, but also encouraging at the same time. We’re very much all in this together. Thank you so much for talking this afternoon.
Alejandro Moledo:
Thank you to you. Thank you very much. We should also work together.
Michelle Bishop:
Yes, absolutely. Let’s keep this going. I’m going to get you in touch with our public policy folks immediately. Thank you.
Alejandro Moledo:
Thank you.
Jack Rosen:
And actually, I have a surprise guest. I’m recording here from Spain and today I am speaking to Mercedes Lopez Miranda, who has spinal muscular atrophy, and she’s going to talk a little bit about what it’s like being a person with a disability and a wheelchair user in Spain. So Mercedes, do you want to tell us a little bit about what it’s like to be a person with a disability in Europe?
Mercedes Lopez Miranda:
Hi. First of all, I am from Venezuela and I am living in Spain like seven years old. Living in Madrid with a disability is really nice because almost every building has accessibility and the public transport is really good, but it has the exceptions like the Renfe. That is a train that doesn’t have any accessibility for wheelchair users, and also the streets sometimes are kind of hard to transit because they are super old cities to change, and that’s difficult. But almost everything works fine.
Jack Rosen:
One thing you mentioned to me before we started recording was that if you need home modifications, that happens through the government. We have something a little similar in the US for people who get Medicare and certain other services, but do you want to talk about that a little?
Mercedes Lopez Miranda:
Once a year, they open a free time where you submit a bunch of papers to adapt your home for your disability or the entrance of the building. So we’re doing that with our bathroom. We’re waiting a response for that, so that’s nice. We don’t have that in Venezuela.
Jack Rosen:
I guess what are some areas where you think Europe could do better in terms of access?
Mercedes Lopez Miranda:
Well, a lot of stores have super big steps to go there and the work area, sometimes it’s super hard to get because companies, even though they have a benefit for people with disability, they don’t hire you. I don’t know why. And then they don’t allow you to work remotely. So that’s the part that I think that they can improve.
Jack Rosen:
So you mentioned one of the challenges is employment and finding remote work. Do you want to talk a little bit about how that works over here and some of the challenges?
Mercedes Lopez Miranda:
Well, in my experience, I have I don’t remember how many interviews, but at least 50. And I get to the last one and they tell me that I can’t work from home, even though I can do my work from home, because I’m a graphic designer and video editor, and they don’t give me a reason why they don’t want to help me to work from home. So that’s one of the biggest challenges that I’ve been getting here in Madrid. So I don’t understand that part, the reason why I can’t work from home even though I can.
Jack Rosen:
Okay. I’m just going to say as aside, if the answer to this question is, “I don’t know,” that’s fine. Is there I guess anything you’ve seen in Europe that you think is something that I guess we could do better in the US?
Mercedes Lopez Miranda:
Well, I don’t know because I’ve been in the United States, and for me, everything is super accessible. So I think it’s in the reverse way, the European people needs to learn from America.
Jack Rosen:
Hey, we’re getting something right. Let’s celebrate that. Thank you so much, Mercedes, for taking the time to talk to us, and I’ll throw it back to the podcast team now who are probably wondering where this interview came from and why I didn’t tell them about this.
Michelle Bishop:
Excuse me, wait. Pause a second. Jack, are you telling me that you secretly recorded a spotlight story?
Jack Rosen:
Oh, but I’m not a host, huh?
Michelle Bishop:
Oh, wow. This episode was going so well between us. Well, it was a great spotlight story, I was going to say, but maybe we should just go to Stephanie for the joke.
Stephanie Flynt:
I don’t know. Now I have Bad Blood by Taylor Swift in my head, and I’m just like, “Is that about to be the theme of the podcast?”
Michelle Bishop:
If it’s the Kendrick Lamar version, I think Jack will like it.
Stephanie Flynt:
Oh, wait. That’s the version where someone raps, right?
Michelle Bishop:
Stephanie, do you not know who Kendrick… I can’t. Just don’t.
Stephanie Flynt:
I do know who Kendrick-
Michelle Bishop:
Lamar.
Stephanie Flynt:
… he’s the one that sings the HUMBLE. song.
Michelle Bishop:
Sings?
Jack Rosen:
I think Nala knows more now because when I was dog-sitting her, I showed her the pop-out concert.
Stephanie Flynt:
The what pop-up?
Michelle Bishop:
As Nala.
Stephanie Flynt:
Oh, she’s asleep. She just glared at me. Okay, so I’m convinced that my life is a pun because apparently I need more change in my life all the time. Not only did I get married… don’t sigh at me, dog… I ended up moving to another apartment and all the fun, moving further outside of the city. But when we moved, we realized there was no overhead lighting in our apartment. And so when I was talking with Quinn about it, I was like, “Well, we can just look on the bright side and get some more lamps.” My life is a pun. It’s fine.
Michelle Bishop:
Everything about this is amazing.
Stephanie Flynt:
Yes. So it is Quinn’s fault that we don’t have any light. We have natural light, we just don’t have light, light. The fake news light.
Michelle Bishop:
Well, give Nala a pet from all of us, especially from Kendrick Lamar, and Jack, please tell the people where they can find us on social media.
Jack Rosen:
You can find us on LinkedIn, Threads, Twitter, Facebook, and Instagram. And as always, you can email us at [email protected]. Until next time, folks.
Stephanie Flynt:
Bye.
Michelle Bishop:
I’m tired.
