Hey, look! I’m talking about disability again! I began doing this openly a few years ago when I first experienced the implications of having a chronic, degenerative health condition myself. Whether I want to or not, I’ve been talking about disability ever since.
It seems to happen naturally when you have a child with special needs. My son has autism therefore I talk about autism, not only to educate other people but also to – InshaAllah – lay the groundwork for the cultural shift that my son, and thousands of other Muslim children, will need in order to survive their own futures.
I talk about other disabilities as well. I have what is considered an invisible disability called Ehlers-Danlos Syndrome. I have a genetic defect in my collagen that is responsible for a domino effect of secondary problems: Autonomic Dysfunction, Postural Orthostatic Tachycardia, Mast Cell Activation Disorder, etcetera, etcetera. My heart, lungs, and especially my joints exist in a state of gradual, invisible deterioration that will persist as long as I do. Currently, I am writing live from an enormous plastic boot meant to protect the tendon I tore in my foot doing nothing fast, dangerous, or remotely interesting.
My advocacy has been an educational experience for myself as well. In talking to the Muslim community about disability, I’ve learned a lot from the Muslim community about disability. For starters, I’ve learned that everyone always agrees with me. It’s awesome!
I say, Muslims with disabilities deserve better! And everyone is always like yeah!
And I say, every Muslim has a right to the masjid! And everyone is like yeah!
And I say, please install a wheelchair ramp! And people are like …yeah.
I’ve learned that there is no difference of opinion — religiously speaking — when it comes to recognizing the rights that Muslims with disabilities have. Like the rights of the poor, the widowed, and the orphaned, the rights of Muslims with disabilities are indisputably part of our religion and our success as a believing community.
So we fundraise for Syria, Takbeer!
And we fundraise for Palestine, Takbeer!
But can we fundraise for that wheelchair ramp?
Allah… willing, sister. Make dua.
It’s weird. We all agree that Muslims with disabilities have the right to access and accommodation in our masajid and our communities, but why don’t we seem to be doing much about it? We all agree that fulfilling these rights are fard, but why do so many of us act like the rights of Muslims with disabilities are optional?
I don’t even mean optional like sunnah. I mean optional like the rights of Muslims with disabilities are some sort of extra, extra credit that we can get around to after we’ve taken care of everything and everyone else first – even when our religion teaches us otherwise. I’m trying to understand this disconnect, I really am. I have to ask, what are we, as a community, missing?
The answer is — roughly 20% of us. Nearly 20% of people in this country are living with some form of disability. The Muslim population is included in that statistic, but is the Muslim community reflective of it? If 200 people pray Jumuah at your masjid, do forty of them have some sort of disability? Of the dozens of people that comprise your social circle, are even like four or five of them disabled?
Remember, 20% of people living in this country have some form of disability, and that’s this country. In places of conflict, more Muslims are permanently disabled through injury. In places of poverty, more Muslims lose their sight and health to otherwise preventable diseases. If twenty out of every hundred people that you knew suddenly stopped coming to the masjid, that would be reason enough for you to take notice. Muslims with disabilities are missing from our masajid, why are we not taking their absence seriously?
I’ve asked around and one of the most common explanations seems to be that people know, but don’t care. So why don’t they care? Maybe they don’t care because disability is not real to them. Maybe until they’re deaf, or their child or their parent is deaf, they don’t think about what it must be like – sitting in the masjid and no one speaking to you? Maybe they’ve never wondered what it feels like, sitting through a khutba that no one will interpret for you. Maybe they’ve never had to imagine never, ever attending Islamic classes because you need sign language interpretation but when you ask for it, no one is willing to provide it for you?
I don’t think that’s too big an assumption for the hearing community or for the neurotypical, able-bodied, and otherwise healthy Muslim community as a whole. Before my son was born with autism I didn’t even know what autism was, let alone how difficult it was to be part of the community if your child is treated like a shaytaan and you as the mother of his evils.
The $250 Quran
True, no amount of well-intentioned empathy or introspection could give a neurotypical, able-bodied Muslim the truest impact or experience of what living with disability is like. The world is full of much that we can never know until we experience it ourselves, but lack of complete knowledge is not an excuse for willfully maintained ignorance. When the collective will to do better is there, then the ways open up.
It took me one conversation – just one – with a visually impaired sister to learn that putting your shoes up on the shoe rack and keeping the wudu area dry isn’t just about tidiness, it’s about safety for the visually impaired. I also learned that, for whatever reason, a braille Qur’an costs over a hundred dollars to print – and this is the Arabic braille – like a pure braille Mushaf. I learned that there are currently NO braille copies of the Saheeh International English translation freely available. If you wanted to buy one, it would cost you … guess. Twenty dollars? Fifty dollars? How much is too much to pay for a translation of the Qur’an?
A braille copy of the Saheeh International translation of the Qur’an costs 250 dollars. I didn’t know this before. Neither did you. But now that we know, are we ok with this? Can we accept free or affordable translations of the Qur’an as standard for everyone except visually impaired Muslims? Oh, and if you think your access to Islamic books is limited by lack of translation – try finding a braille copy of Sahih Bukhari or Diseases of the Heart or Fortress of The Muslim.
Allah made some Muslims blind – that’s the Qadr of Allah. But we’re the ones keeping them from religious education through our collective ignorance and apathy of their situation. Allah made some Muslims deaf, but we isolate them when we refuse to provide sign language they need to “hear” or learn from anything that is being taught in the masjid. Allah made some Muslims unable to walk, but we’re the ones preventing them from attending prayer and being part of the community. We decided that as long as we can get through the front door, that it’s no problem if other Muslims can’t. As long as we can do wudu and we can access the musalla, who cares if other Muslims can’t?
Twenty percent of Muslims live with some sort of disability. Are we the 80% saying – silently through our actions, even if not out loud with our words –that as long as we can learn our religion, we can be part of the community, and we can get married and get hired and live happily ever after – as long as we can do this, that we don’t care if other Muslims can’t.
Love For Your Brother
The Messenger of Allah said:
None of us truly believes, until we love for our brothers and sisters what we love for ourselves. “
That is a very clear, very direct, very powerful statement. We are not people of true faith until we take care of all Muslims as well as we would like to be taken care of ourselves. Our own brothers and sisters face unnecessary social and religious isolation – not because of their disability – but because of OUR RESPONSE to their disability. And maybe none of these Muslims are your parents or your children, but all of these Muslims are your brothers and sisters.
You don’t have to have a special needs child to ask your masjid to provide Sunday School or a Hifz Program for children with special needs. You don’t have to lose your sight to make education and events accessible to those who have. You don’t have to be deaf in order to make sure that your masjid is teaching and speaking to those who are. You don’t have to know anyone with a special need of any sort to know that they deserve as much from the community as you do. All you need is the knowledge that another Muslim needs you. And then you just have to help.
Disability is a test. It has a start, and end, and a reward for success. And like all tests, disability is an opportunity for us to do right by each other by loving for each other, what we love for ourselves. Allah willed that twenty percent of us should be honored with the opportunity to earn extra blessings by enduring extra challenges. And Allah demands that the rest of us rise to the occasion and serve Him by serving His creation.
Please learn about and support the following organizations that are making progress in the arena of disabled Muslims every day:
Islam By Touch: www.islambytouch.com
International Services for Deaf and Hard of Hearing: www.isdhh.org
Why I Turned to Tech to Catch Laylatul Qadr
Make sure you maximize your sadaqah
My life, just like yours, is sooo busy. So naturally, as the tech nerd I am, I turn to tech to help me manage my regular routine including project management apps to manage my daily tasks. I even have a sleeping app that wakes me up at the optimum time (whatever that means!). But even though tech has changed everything in all sectors and helped make efficiencies in my daily life, it had had little impact on my religious activities.
A few years ago, whilst I was preparing for the last 10 nights of Ramadan, it hit me – why doesn’t something exist that automates my donations during these blessed nights to catch Laylatul Qadr. Rather than putting a reminder on my phone to bring out my bank card every night and inputting it into a website – why doesn’t something exist that does it for me, solving the problem of me forgetting to donate. After all we are human and it’s interesting that the Arabic word for human being is ‘insan’ which is derived from the word ‘nasiya’ which means ‘to forget.’ It is human nature to forget.
So the techie in me came out and I built the first scrappy version of MyTenNights, a platform to automate donations in the last 10 nights of Ramadan (took two weeks) because I wanted to use it myself! I thought it would be cool and my friends and family could use it too. That same year, nearly 2000 other people used it – servers crashed, tech broke and I had to get all my friends and Oreo (my cat) to respond to email complaints about our temperamental site!
I quickly realised I wasn’t alone in my need – everyone wanted a way to never miss Laylatul Qadr! Two years down the line we’ve called it MyTenNights, and our team has grown to 10, including Oreo, senior developers, QA specialists, brand strategists, creative directors and more. It fast became a fierce operation – an operation to help people all over the world catch Laylatul Qadr!
Last year alone we raised almost $2 million in just 10 days – and that was just in the UK. We’ve now opened MyTenNights to our American, Canadian. South African and Australian brothers and sisters and we’re so excited to see how they use it! We’ve made it available through all the biggest house name charities – Islamic Relief, Muslim Aid, Helping Hand, Penny Appeal, you name it! All donations go directly to the charity donors choose – all 100% of it.
Looking back at the last couple of years – it feels surreal: The biggest charities in the world and tens of thousands of users who share my need to be certain they’ve caught Laylatul Qadr. Although I hear many impressed with the sheer amount MyTenNights has raised for charity (and that excites me too!), it’s not what motives me to go on. What excites me most is the growing number of people who catch Laylatul Qadr because we made it easier.
I often tell my team that the number of people that use MyTenNights is the only metric we care about, and the only metric we celebrate. It makes no difference to us whether you donate $1 or a million – we just want you to catch Laylatul Qadr and for you to transform your Akhirah, because (after Allah) we helped you do it.
Ismael Abdela is a Law & Anthropology graduate from the London School of Economics. He spent some years studying Islamic Sciences in Qaseem, Saudi Arabia. He is now a keen social entrepreneur. Ismael likes to write about spiritual reflections, social commentary, and tafsīr. He is particularly interested in putting religion in conversation with the social sciences.
How Do Muslims Plan for Disability
Families with children with disability have an extraordinary set of challenges and blessings. Disability (or special needs) is a broad term.
Many disabilities will prevent what we often think of as “normal.” It may hinder or prevent educational opportunities, and employment. Many people with “special needs” can get educated, get married and live long and productive lives. The problem for many parents of younger children with special needs is that they typically have no certainty about their children’s future needs. Even if the situation looks dire, it may not stay that way.
How do parents plan for a world where they may not be around to see how things will end up for their special needs children? What can they do to help their children in a way that does not violate Islamic Inheritance rules?
Certain types of disability, especially the loss of executive decision-making ability, could also happen well into adulthood. This can be a threat to a family’s wealth and be the cause of internal conflicts. This is the kind of thing every adult needs to think about before it happens.
The issues are not just that parents believe their special needs child will need more inheritance than other children. Muslim parents usually don’t think that. Some parents don’t want their special needs child to get any inheritance at all. Not because of any ill-will against their special needs child; just the opposite, but because they are afraid inheritance will result in sabotaging their child’s needs-based government benefits.
Many, perhaps most special needs children do not have any use for needs-based benefits (benefits for the poor). But many do, or many parents might figure that it is a distinct possibility. This article is a brief explanation of some of the options available for parents of special needs children. It won’t go over every option, but rather those that are usually incorporated as part of any Islamic Estate Planning.
Please Stand By
Example: Salma has three daughters and two sons. One of her children, Khalida, 3, has Down Syndrome. At this point, Salma knows that raising Khalida is going to be an immense challenge for herself, her husband Rashid and all the older siblings. What she does not know, however, is what specific care Khalida is going to need through her life or how her disability will continue to be relevant. She does not know a lot about Khalida’s future marriage prospects, ability to be employed and be independent, though obviously like any parent she has nothing but positive hopes for her child’s life.
In the event of her death, Salma wants to make sure her daughter gets her Islamic right to inheritance. However, if Khalida needs public benefits, Salma does not want her daughter disqualified because she has her own money.
Her solution is something called a “stand-by special needs trust.” This type of trust is done in conjunction with an Islamic Inheritance Plan and is typically part of a living trust, though it could also be a trust drafted into the last will. I will describe more about what a special needs trust is below. For Salma, she is the Trustee of her trust. After she dies, she names her husband (or someone else) the successor Trustee. The trust is drafted to prevent it from becoming an “available resource” used to determine eligibility for public benefits such as Supplemental Security Income (SSI), Medicaid and other benefits that go with that.
If it turns out that Salma passes away when Khalida is 5, and her assets are held in trust for her until she is 18 and her Trustee determines she does not need a special needs trust, she will get her inheritance precisely like everyone else based on their Islamic right. If she does need benefits, the Trustee will only make distributions to Khalida that would not harm her eligibility.
This way, there is no need to deny Khalida her inheritance because of her disability, and she is also making sure giving her daughter inheritance would not harm her daughter’s healthcare or other necessary support.
The Shape of Special Needs Trusts
A stand-alone Special needs trusts, which is sometimes called a “supplemental needs trust” the kind without the “stand-by” variation I described above, are a standard device for families that have children with special needs. A trust is a property ownership device. A Grantor gives the property to a Trustee, who manages the property for the benefit of a beneficiary. In a revocable living trust, the Grantor, Trustee, and Beneficiary are typically the same person.
When the trust is irrevocable, the Grantor, Trustee, and Beneficiary may all be different people. In a special needs trust, the person with a disability is the beneficiary. Sometimes, the person with a disability is also the Grantor, the person who created the trust. This might happen if there is a settlement from a lawsuit for example and the person with special needs wants it to be paid to the trust.
In many if not most cases, the goal may not be to protect the beneficiary’s ability to get public benefits at all. Many people with a disability don’t get special government benefits. But they do want to protect the beneficiaries from having to manage the assets. Some people are just more susceptible to abuse.
The structure of the arrangement typically reflects the complexity of the family, the desire of siblings and extended family to continue to be involved in the care and attending to the needs of the person with a disability, even if they are not the person directly writing checks.
Example: Care for Zayna
Example: Zayna is a 24-year-old woman with limited ability to communicate, take care of her needs and requires 24-hour care. Zayna has three healthy siblings, many aunts, uncles, and cousins. Her father, Elias, earns about $70,000 per year and is divorced. Zayna’s mother Sameena cannot contribute, as she is on social security disability. However, Zayna’s adult brother and sisters, brother in laws, sister in law and several aunts, uncles want to help Zayna meet her needs E.lyas creates a third party special needs trust that would ensure Zayna has what she needs in the years to come.
Zayna receives need-based public benefits that are vital to her in living with her various disabilities and her struggle to gain increasing independence, knowledge and dignity. So the trust needs to be set up and professionally administered to make sure that when Zayna gets any benefit from her trust, it does not end up disqualifying her ability to get any needs-based benefit.
Contributions to the special needs trust will not go against Islamic Inheritance rules unless made after the death of the donor.
If Zayna dies, her assets from the special needs trust will be distributed based on the Islamic rules of inheritance as it applies to her.
When disability planning is not about Public Benefits
Perhaps most families with special needs children do not use any needs-based public assistance. They are still concerned about special needs and planning for it.
Example: Khadija, 16, is on the autism spectrum. For those familiar with the autism spectrum, that could mean a lot of things. For her parents, Sarah and Yacoob, other than certain habits that are harmless and easy to get used to, it means Khadija is very trusting of people. Otherwise, she does well in school, and her parents don’t think she needs way more help than her siblings and she has just as good a chance of leading a healthy and productive life as any 16-year-old girl.
The downside of being too trusting is that the outside world can exploit her. If she ends up getting inheritance or gifts, she may lose it. The parents decide that when she gets her inheritance, it will be in a trust that would continue through her life. There will be a trustee who will make sure she has what she needs from her trust, but that nobody can exploit her.
In some ways, what Khadija’s parents Sarah and Yacoob are doing is not so different from what parents might do if they have a child with a substance abuse problem. They want to give their child her rights, but they don’t want to allow for exploitation and abuse.
Considering your own needs
There are many people who are easy marks for scammers, yet you would be unlikely to know this unless you are either a close friend or family member, or a scammer yourself. While this often happens to the elderly, it can happen at just about any age. Everyone should consider developing an “incapacity plan” to preserve their wealth even if they lose their executive decision-making ability.
There is this process in state courts known as “conservatorship.” Indeed, entire courtrooms dedicate themselves to conservatorships and other mental health-related issues. It is a legal process that causes an individual to lose their financial or personal freedom because a court has essentially declared them not competent to handle their affairs. Conservatorships are a public process. They can cause a lot of pain embarrassment and internal family strife.
One of the benefits of a well-drafted living trust is to protect privacy and dignity during difficult times.
Example: Haris Investing in Cambodian Rice Farms
Haris, 63, was eating lunch at a diner. In the waiting area, he became fast friends with Mellissa; a thirty-something woman who was interested in talking about Haris’s grandchildren. The conversation then turned Melissa and her desire to start a business selling long distance calling cards. Haris was fascinated by this and thought it made good business sense. Haris gave Mellissa $20,000.00. The two exchanged numbers. The next day, Mellissa’s number was disconnected.
Haris’s wife, Julie became alarmed by this. It was out of character for her husband to just fork over $20,000 to anyone on the spur of the moment. What was worse is that the business failed immediately.
Three months later, Haris meets Mellissa at the diner again. She then convinces Haris to invest $50,000 in a Cambodian rice farm, which he does right away. His wife Julie was pretty upset.
How living trusts helps
As it happened though, Haris, a few years before, created a living trust. It has a provision that includes incapacity planning. There are two essential parts to this: The first is a system to decide if someone has lost their executive decision-making ability. The second is to have a successor Trustee to look over the estate when the individual has lost this capacity. This question is about Haris’s fundamental freedom: his ability to spend his own money.
If you asked Haris, he would say nothing is wrong with him. He looks and sounds excellent. Tells the best dad jokes. He goes to the gym five times a week and can probably beat you at arm wrestling. Haris made some financial mistakes. Everyone makes mistakes.
Julie, and his adult children Haroon, Kulsum, Abdullah, and Rasheeda are not so sure it’s just a mistake. The living trust created a “disability panel.” This panel gets to vote, privately, in if Haris should continue to act as Trustee of his own money. If they vote that he should not manage his own money, his wife does it for him.
The family has a way to decide an important and sensitive issue while maintaining Haris’ dignity, privacy and wealth. Haris’s friends don’t know anything about long distance calling cards or a Cambodian rice farm; they don’t know he lost his ability to act as Trustee of his trust. Indeed the rest of the world is oblivious to all of this.
Planning for everyone
Islamic inheritance is fard and every Muslim should endeavor to incorporate it into their lives. As it happens it is an obligation Muslims, at least those in the United States, routinely ignore or deal with inadequately. However, there is more to planning than just what shares go to whom after death. Every family needs to create a system. There may or may not be problems with children or even with yourself (other than death, which will happen), but you should do whatever you can to protect your family’s wealth and dignity while also fulfilling your obligations to both yourself and your family.
Should Spiritual Leaders Who Violate Our Trust Be Forgiven?
Some people want to move past the indiscretions of community leaders quickly as though they never occurred while others wish to permanently blacklist them. This article examines a third option between the two that can be a win-win for the fallen leader, the victims, and the community.
In the past couple of years, a number of simmering scandals among spiritual leaders became public knowledge and the subject of vigorous and often painful public debate. As someone who has worked in the community dawah space the past 15 years, often acting as a bridge between past and present microcelebrity as well as non-celeb teachers to the community at large, one question I’ve been asked repeatedly – should community leaders who violate our trust be forgiven? I’m often asked by people who aren’t fanboys / fangirls taken by microcelebrity dawah culture or wearing spiritual blinders for non-celebs, and often don’t even understand what has occurred. Below I share answers I have heard as well as what I believe is fair and pragmatic in many (not all) situations.
Answer #1: Yes, We Must Forgive Them
One group of people argue we should completely forgive them. No one is perfect, everyone is human and makes mistakes. If we assume the mistake was truly made, then we should also forgive them and move on. Our faith is replete with statements about Allah’s Mercy, and if we want His Mercy, surely we should also give it to others. Oftentimes, members who fall into this group don’t actually believe the person in question is at fault and are trying to convince others either on the fence or against the individual to let it go. Of course, there are some who believe the violation occurred and not think it a big deal, while others may think the violation indeed was a big deal, and should still be forgiven. I can agree with some aspects of this, but not completely.
Answer #2: No, They Should Never Be Forgiven
Another group believes that once a person commits a violation of trust, they are no longer to be trusted again. They should leave their positions and be ostracized from the community permanently. They are to be tarred and feathered and made an example of for life. Members within this group oftentimes don’t need to wait for evidence to arrive at any conclusion – they were judge, jury, and executioner well before there was a trial. Not all members are like this, of course – some waited for evidence and then reached their conclusions that the gravity of the charges was too much and therefore the person should never be forgiven.
Answer #3: It Depends – Forgive Them If They Take Ownership and Make Amends
In my view, the problem with the first group is they don’t often see that the person did anything wrong, or if they did, it’s trivial relative to the khayr, the good and benefit they bring to the community. They keep citing that Allah is forgiving, so we should forgive automatically, but in their haste, they forget that part of the process of making restitution is first sincerely regretting what one has done.
To sincerely regret, one must also move out of denial and into acceptance that they made a mistake. Once one admits failure, they can then ask to be forgiven, and then the aggrieved party is in a position to grant it. The community forgiving and re-integrating a person who refuses to take responsibility for their wrongdoing does neither them, their victims, nor the community any good. We continue to distrust the person and they continue to believe they can get away with whatever they wish because they are “special”. Victims fear community integration, everyone becomes cynical about religion, and the cause of calling people to become better worshippers of Allah is harmed.
On the flip side, the second group is far too extreme in their view of justice. To ostracize that person and leave them no path of return means they have no means to redeem themselves, and de facto their families are casualties who must deal with the fallout of being pushed out of the community. I agree that none of us are perfect, and we all often make egregious mistakes. In my own experience, there are many instances where activists who advocate publicly for better are often involved privately in worse than those they go after.
That being the case, there is no person that can’t be forgiven, and I would say we shouldn’t leave aside this possibility in our dealings with those who fail us just as we expect it when we ourselves fall short, sometimes seriously so. I would add that we would lose the skills and talent of that person – if we believe in allowing people with criminal histories back into the general population and providing them with opportunities to become productive, reformed citizens, I don’t see why we wouldn’t offer the same to our community and religious leaders.
The key I believe is in following a process which includes the following for the individual:
- Taking Responsibility: They own responsibility for the mistake and acknowledge it was made. No amount of denial, minimization, and spin will suffice.
- Make Restitution: First and foremost, they apologize and make amends as best they can with the victims. If the issue went public, then they should apologize to those they were serving as a leader for their mistake as well. This includes handling financial compensation.
- Remediating Oneself: Enroll in counseling, therapy, mentorship, and / or group support programs to help them overcome their issues.
- Being Held Accountable: Work with others on concrete milestones of both behavior and programs that demonstrate their commitment to change. Be able to show the community that they take reformation seriously and are committed to coming out of their mistake a better person, one who can even advise others of the mistake and how not to repeat it.
As someone who has worked in dawah and supported the ascension of numerous modern-day microcelebrity spiritual scholars and teachers, I and others like me act as a bridge between them and the community. I do not speak for all of them, certainly, but I know that any leader who tries to re-integrate into the community without taking responsibility will continue to find that many will not support them. Most, in this case, feel a sacred duty to oppose their elephant-in-the-room integration to protect the community at large.
Likewise, I know that many like myself would be willing to overlook and forgive such individuals if they took responsibility for their behavior and demonstrated they were taking concrete steps to make amends for their mistakes. The month of Ramadan is upon us, and sometimes one just has to rip the band-aid off, go through the process of feeling the pain of scrutiny for owning up, and then moving forward to forgiveness. I won’t promise it’s easy or that everyone will change, but I can at least say many of us would have an easier time accepting individuals back into the community.
What’s your view on these situations?
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