I’m a member of one of the largest online communities for disability ministry leaders. This group can be a great place for sharing resources. From intake forms, to sensory rooms, to sharing information about trainings and conferences. You are looking for a Bible study for adults with intellectual disabilities? Ask and you’ll get a few recommendations. Struggling with training your volunteers? A few people have created online training you can use. This group is a wealth of information and support.

However, when it comes to disability ministry, I’ve observed that most people leading these ministries are white, non-disabled individuals. 

Disabled people belong to a marginalized community. Yet the people leading most of these ministries do not belong to any marginalized communities, so from the beginning, there is a disconnect in how the leaders experience the world as opposed to how disabled individuals experience the world. 

I also want to address the role of parents of disabled kids. While there are parents of disabled kids leading some of these ministries, parenting someone with a disability is not the same as being actually disabled. 

I want to dive a little bit more on the role of parents of disabled kids who are involved in spaces for disabled individuals, and I know it’s going to make some people uncomfortable, maybe even feel a little defensive. I have observed some parents see themselves as members of the disability community. I know I used to. 

So let’s make this clear: parents of disabled children are not members of the disability community unless they themselves are disabled. 

We are part of the parenting community, and there is a parenting community specific to parents of disabled kids, because the challenges, the joys, the life we live as a result of the children we have can be — and often is — different from those who parent typical kids. But that is the parenting community. The reality is, we are parenting kids from a community that we ourselves do not belong to. 

Related: Bringing Together Parents of Kids With Disabilities and Disabled Adults

So let’s bring this back to disability ministry. Why is it that we don’t see disabled people leading disability ministries? 

1. Disabled people are missing in our churches.

And there is a reason for that. Actually, there are probably many reasons. But for anyone who spends time talking to disabled individuals about their experiences at church, we find out the Church can be one of the most harmful and ableist spaces. We claim to be welcoming, but we have not welcomed disabled people. The push for healing and “disability as a result of sin” needs to stop. Our theology of disability is problematic and the reason we need better teaching on theology of disability.

2. Disabled people are rarely given the opportunity to hold positions of leadership. 

This is not only a Church thing. It comes from the same system that keeps disabled people underemployed. It’s not because they don’t have the skills, they’re just not given the opportunity. The same happens at church, where people don’t see disabled individuals as capable or equals. 

As a Church, we have failed to see disabled people as co-laborers. We don’t value the voices of disabled individuals. I have been in groups where disabled individuals speak up in disability ministry settings saying, “Hey, wait a second, don’t do that, that’s harmful, that’s bad, that hurts us.” And even in these spaces, where the the people in the group hold jobs that are supposed to welcome disabled individuals, include them in the church, to serve them — these leaders are turning to those disabled voices saying, “You don’t get to speak for other disabled individuals.”

This roughly translates into this: “You, an actually disabled person, don’t get to speak for other disabled people. What I have to say as a non-disabled person has more value than what you say. I have decided that my perceptions are more valid than your actually lived experiences as someone who is disabled.”

 This is exactly the message we give when we dismiss the voices of disabled individuals. I have seen this happen several times. This is a systemic problem we have in disability ministry.

3. People see disability ministry the way they see children’s ministry or youth ministry. As if disabled people were another branch of “children.”

 Let’s think of it this way. I am Mexican. I’m an immigrant. If I hear a church has a Hispanic ministry, I expect to go and connect with my people, my culture, my language, my community. If I show up and the person teaching, leading, and organizing is a white person, I am out. Because in order to have a ministry for Latinx individuals, you have to be one of us to understand who we are as  a people. Even my husband — we’ve been married for 18 years — who knows the most about my experiences as an immigrant, who knows the most about my family, who has been to Mexico and has been around my family, he is still not qualified to lead a Hispanic ministry because he himself is not Hispanic. He can understand to some extent, he can sympathize, he can engage in conversations regarding our experiences, but to actually know what it means to be Hispanic and lead that community? No, he is not qualified. He’s not one of us. 

When you have a women’s ministry, you expect a woman to lead it. If you have a men’s ministry, who’s leading the ministry? A man. Even if you have a homeschooling ministry, who’s leading it? Someone who is homeschooling their kids or used to. So we recognize that the best and most qualified leaders of these ministries are people who are a part of the communities. 

Yet, this is not what we see in disability ministry. 

On the other hand, this does not apply to children’s ministry, because we don’t have children leading children, we don’t have a youth leading youth. Of course children and youth can have leadership positions, but you’re not going to walk into a church and be greeted by a fifth grader who is the children’s pastor, or a seventeen-year-old who is a youth pastor. 

So why is disability ministry led by people outside of the disability community? Why is it led by non disabled individuals? This is a direct reflection on how we truly view and perceive disabled individuals.  Perhaps it is the problematic idea of “perpetual children.”

I also wonder if this is why most disability ministries are only focused on children, and why churches fail to integrate youth and adults with disabilities into their churches. I believe it is because the right people — actually disabled individuals — are not the ones leading these efforts. We don’t see them as capable. We don’t see them as co-laborers.

That is the massive problem with disability ministry. 

This is how we end up with the nice, well intentioned, non-disabled individuals who will decide what is best for a community they don’t belong to. 

And just to be clear, even when a disability ministry is focused only on children, the leaders should be members of the disability community. Remember, it is about lived experiences.

There are so many different types of disabilities, yet for some reason, almost all conversations about disability ministry end up focusing primarily on intellectual disabilities and they make that be the “one size fits all.” There is a problematic, yet common belief, that those with intellectual disabilities “cannot speak for themselves.” And the list of people who apparently are “qualified” to do so, often push away the voices of other disabled individuals. This allows for ableism to go unchecked. I also wonder if this is why non-disabled individuals continue to dominate these spaces.

As a side note, all forms of communication are valid. My job as a parent — I have a child with an intellectual disability — is not to be her voice, my job is to amplify hers. 

 Nothing is more humbling as a parent, yet more important, than recognizing that if you parent a child who is disabled and you yourself are not, it means your child belongs to a different community than you do. It also means your child experiences the world in a way that you will never experience. But there are other people who experience the world in similar ways as your child, and they do have a better understanding, and they do have better ways of approaching challenges. 

The disabled experience is wide. There are so many different disabilities. Yet someone with a disability is better qualified and can better understand the disabled experience in ways that a non-disabled individual — or parent of a disabled individual — never will. They know what it is like to show up at church being disabled, even if the disability is different.

The current disability ministry model is based on non-disabled individuals making decisions and creating ministries based on good intentions and perceptions, but not actual lived experiences. 

Related: Dear Church, People With Disabilities Matter

There is a saying in the disability community, “Nothing about us without us” and disabled individuals are being excluded from leading disability ministries. The current model is, “Everything about us, without us.” That needs to change.

Disabled individuals are capable, resourceful, creative. They are leaders. It is time we recognized they are the ones to lead disability ministries. 

Currently, if you show up to a disability ministry conference it will reflect who is leading these ministries: primarily white non-disabled individuals, may of them parents of disabled kids. Time for us to step down and elevate the voices of disabled individuals.